Wednesday, July 16, 2008
New Location
Since Lydia's diagnosis, I've been really interested in finding out all that I can about other patients with mito diagnoses. Many of them have sites on the Caring Bridge website, and I have found it helpful for learning about their stories...I usually go straight to the "My Story" section and the photos because it usually gives the "big picture"about them. Since I've been networking a little with other mothers, I think it would be helpful to have this same format to share so that they can easily get the "big picture" about Lydia. So, I've decided to move her updates to a Caring Bridge site. From now on, visit www.caringbridge.org/visit/lydiapoche to access updates about Lydia and our family. I have so far added info in "My Story" and the journal. Since we are at the hospital right now, I do not have access to my pictures....hopefully, I'll be able to add some soon when we get home. :)
What a trooper!
Surgery went well this morning....only about 25 minutes. All of the nurses and doctors were so impressed with how good Lydia was. They are used to babies crying when they come in for surgery because they are hungry. Lydia, of course, was not at all bothered by the fact that she wasn't able to eat. We laughed and said it was sort of like a break for her. She was just as content as can be as we awaited the surgery....then when she came out of recovery, she was the same way...so content...a few little smiles...no crying. Until about 30 minutes ago, we didn't hear a peep from her. Now we figure that the anesthesia has pretty much completey worn off because she is starting to get uncomfortable...a whining pain cry. We are in the process of trying to get some pain meds for her. Our nurse is waiting to get orders from the doctor. Brandi explained that it is tricky with G-tube surgery...they don't like to give a lot of pain meds through the IV because of associated risks, and Lydia can't have anything in her stomach right now because it needs time to heal. She said they will probably order a Tylenol suppository. Hopefully, she will get it soon so that she can rest.
Dr. Lopoo said that she will get Pedialyte in the tube this evening and formula in it tomorrow. If she does OK with it, we may be able to go home by about noon tomorrow...depending on how well she is doing. He doesn't want us to feed her by mouth until we are sure that the tube-feeding is going OK. Dr Lopoo wants to see her on Monday to remove the bandages and the extra attachment....there is an extra attachment from the tube to use for feeding and meds until her appointment since the site is bandaged.
Thank you all for your prayers and thoughts about Lydia today...she is doing very well so far...please continue prayers. :)
Dr. Lopoo said that she will get Pedialyte in the tube this evening and formula in it tomorrow. If she does OK with it, we may be able to go home by about noon tomorrow...depending on how well she is doing. He doesn't want us to feed her by mouth until we are sure that the tube-feeding is going OK. Dr Lopoo wants to see her on Monday to remove the bandages and the extra attachment....there is an extra attachment from the tube to use for feeding and meds until her appointment since the site is bandaged.
Thank you all for your prayers and thoughts about Lydia today...she is doing very well so far...please continue prayers. :)
Thursday, July 10, 2008
Happy Day
Yesterday, I took Lydia back to Dr Wood to recheck her urine. They had called to say that the test from Monday came back normal, but I thought that I detected a smell in her urine again and a tiny bit of discharge. Dr Wood said her urine looked perfect this time too...no problems. Yippee!
Everyone who saw Lydia today commented about her happy smiles! We had noticed ever since she started the Keppra that her smiles had seemed to fade...not as bright and often as before. Today, she seemed to be showing a little more of her "old self" again...though the smiles have been gradually coming back...more and more often and more and more bright. She was even happy with therapy today. She had OT with Terry this morning and Speech with Joy this afternoon. She seemed to be in a good mood for both of them. Maybe the dum-dum suckers had something to do with that....? They have both been trying to do some oral stimulation in Lydia's mouth...trying to desensitize her a little to lessen the gag reflex and help her to tolerate food in her mouth better. Along with several other tools and gadgets that they used, they both introduced the suckers today...she liked strawberry more than grape. It was cute to see her smacking her lips after getting that first taste.
Joy started to work on trying to get her to imitate. She thought she saw Lydia attempt to imitate blinking her eyes. She told me to continue working with trying to get her to imitate...blinking, sticking out tongue, rasberries...pretty much anything we can get her to do. I was working with her tonight to try to get her to stick out her tongue. She was watching me so intently...a few times she actually got her tongue out between her lips. I can't say with certainty that it was in response to me...but, I sure cheered really loud when she did it....startled her a little. I was so proud of her! It's so funny how everything is relative...Martin and I have both said many times about Lydia in certain situations, "She is so smart!" The blessing is that we only have to compare her to herself...not to other kids her age, so every new accomplishment or skill learned makes her smarter or more advanced than before.
I've been in contact with another mother of a mito patient...in this area. Thank you Tracy for putting us in touch with each other. This mother has two children with the disorder...complexes I, IV, and III. The most affected child was diagnosed at age 9...he was told that he had 6 months-2 years max to live. He is now 17 and will be graduating from high school next year. He has many medical challenges, but she says that he has a good quality of life. We hope to be in touch with each other to learn more about him. And...he also sees Dr Wood and Dr Hollman. Another encouraging story.
Thanks for your continued prayers and support. The recent responses of encouragement and prayer have really warmed my heart. How blessed we are to have so many people following our journey. Lydia definitely is a lucky girl.
Everyone who saw Lydia today commented about her happy smiles! We had noticed ever since she started the Keppra that her smiles had seemed to fade...not as bright and often as before. Today, she seemed to be showing a little more of her "old self" again...though the smiles have been gradually coming back...more and more often and more and more bright. She was even happy with therapy today. She had OT with Terry this morning and Speech with Joy this afternoon. She seemed to be in a good mood for both of them. Maybe the dum-dum suckers had something to do with that....? They have both been trying to do some oral stimulation in Lydia's mouth...trying to desensitize her a little to lessen the gag reflex and help her to tolerate food in her mouth better. Along with several other tools and gadgets that they used, they both introduced the suckers today...she liked strawberry more than grape. It was cute to see her smacking her lips after getting that first taste.
Joy started to work on trying to get her to imitate. She thought she saw Lydia attempt to imitate blinking her eyes. She told me to continue working with trying to get her to imitate...blinking, sticking out tongue, rasberries...pretty much anything we can get her to do. I was working with her tonight to try to get her to stick out her tongue. She was watching me so intently...a few times she actually got her tongue out between her lips. I can't say with certainty that it was in response to me...but, I sure cheered really loud when she did it....startled her a little. I was so proud of her! It's so funny how everything is relative...Martin and I have both said many times about Lydia in certain situations, "She is so smart!" The blessing is that we only have to compare her to herself...not to other kids her age, so every new accomplishment or skill learned makes her smarter or more advanced than before.
I've been in contact with another mother of a mito patient...in this area. Thank you Tracy for putting us in touch with each other. This mother has two children with the disorder...complexes I, IV, and III. The most affected child was diagnosed at age 9...he was told that he had 6 months-2 years max to live. He is now 17 and will be graduating from high school next year. He has many medical challenges, but she says that he has a good quality of life. We hope to be in touch with each other to learn more about him. And...he also sees Dr Wood and Dr Hollman. Another encouraging story.
Thanks for your continued prayers and support. The recent responses of encouragement and prayer have really warmed my heart. How blessed we are to have so many people following our journey. Lydia definitely is a lucky girl.
Monday, July 7, 2008
G-Tube Scheduled
We met with the surgeon, Dr. Lopoo, today to discuss Lydia's G-tube surgery. It is scheduled for next Wednesday morning, July 16th. We will stay overnight so that she can be monitored for any chance of infection or complication. That makes her mom feel a lot better. I'm having a little anxiety about the whole situation...it's so real now. I know it is the best choice (the only choice), so I just have to give all worries to God. I spent some time online last night researching about mitochondrial disorder....which is good and bad. The more I learn, the more educated I feel about taking care of our precious gift....but, at the same time, the more scared I get about possible scenarios that we might face and the UNKNOWN, which is vast in the world of mitochondrial disorders. Thanks Tiffanie and Martin for helping to bring me back to Truth tonight....the Truth is that our all-knowing God is powerful and has a plan. He will help me to be sure that I am prepared in all the ways that He wants me to be to take care of His perfect Lydia that He has shared with us. He is here to take all of my worries away....there are no worries where there is God.
Sunday, July 6, 2008
Encouragement
Lydia made it to 15 lbs!!!! Hooray!
She is doing really well with her prop-sitting. She impressed Aunt Becky and some other family members at our family reunion on the 4th. She sat up on my lap for a long time. Her record has been 47 seconds. We're working on increasing that.
Still no rolls since the one at the beach, but we're trying to encourage that too...when she picks herself up on her hands or elbows (which is still getting easier and easier for her) I'm trying to show her how to lean to one side and roll that way. I'm sure that's how she did it the first time by accident...she just leaned so far to the right while she was holding her head up that she fell over.
I recently came across a caring bridge site for a boy with a mitochondrial disorder with defects in Complexes I and III, same as Lydia. It was very encouraging to see how well he is doing. Let me make this clear, so that there are no false expectations...even though they have defects in the same complexes, it doesn't mean that their symptoms or outcome would be the same. Dr Superneau describes it like this....think of the complexes as offices. We know from Lydia's tests that Office I and Office III are not putting out efficient work, but science has not advanced enough to get into the offices to find out which "worker" is causing the problem. So, this little boy's "problem workers" may not be the same as Lydia's, which means that their presentation of the disease and symptoms and control of those may be different. With that said, this is the first case that I have come across with even the same complexes involved. Most that I have seen have only one complex involved. Anyway, you will be amazed at how well this little boy is doing, and any encouragement is wonderful.
I emailed his mom with a brief description of Lydia and her issues and these questions:
When was he diagnosed?
Who is his doctor?
Do you see a mito specialist regularly?
How old is he now?
What symptoms did/does he have?
When did you start to see improvements?
What improvements have you seen?
What has been his prognosis?
Has he exceeded any of the doctors’ expectations?
This was her response:
"Well, our paths sound similar! I will let you check out the "My story" section on his Caring Bridge site (www.caringbridge.org/visit/calebryankelso) for the specifics.
We first heard the term Mitochondrial Disease when he was almost 9 months old. Thanksgiving Day 2005.
Dr Shoffner did his muscle BX, but we see a local mito doc (Dr Hainline) here in Indiana about every 6 months.
He turned 3 in March and right now we deal with reflux and constipation. Along with some developmentally delay and some speech delay. He runs only about 6 months behind.
We started seeing improvements about 3 weeks after starting the cocktail (CoQ10, Riboflavin and Carnitine). And the improvements have been HUGE!!!! And quick at coming. He started smiling again on 12-15-2005 and by New Years Day he was rolling over. He has exceeded ALL of the doctors expectations, and they still look at him with their mouth hanging open.
He is completely potty trained (for about a month now) and we started the process right at his third birthday. So it took about 3 months total for complete training. Not too bad!!!
As with most mito patients, they don't say much about his prognosis. Simply because they just don't know. He is doing well, but that can change any given day. We try to keep him healthy and we make sure he is always WELL hydrated and fed. Caleb is our miracle. They don't know why he made such huge progress and for, all intents and purposes, is now a normal little 3 yr old. We had LOTS of prayer from around the world and wonderful therapists. I stayed home to work with him and we worked CONSTANTLY on what the therapists suggested."
Just wanted to share this encouragement with you. I've been telling Martin lately that I feel like Lydia will walk one day...I can actually visualize her doing it. I see her standing at a little walker, with her head tilted to one side (like she often does) and with that "this is hard, but I'm determined to do it" look on her face...taking small, difficult steps. I just see her as a hard worker. We have been so proud of all that she has accomplished so far. She is such a little trooper. Everytime we have our 30-45 minute medicine sessions, I tell her how proud I am of her...it's terrible for her, but she gets through it. She is an inspiration to many of us. What a precious gift! Thank you God for putting our little Lydia into our lives!
She is doing really well with her prop-sitting. She impressed Aunt Becky and some other family members at our family reunion on the 4th. She sat up on my lap for a long time. Her record has been 47 seconds. We're working on increasing that.
Still no rolls since the one at the beach, but we're trying to encourage that too...when she picks herself up on her hands or elbows (which is still getting easier and easier for her) I'm trying to show her how to lean to one side and roll that way. I'm sure that's how she did it the first time by accident...she just leaned so far to the right while she was holding her head up that she fell over.
I recently came across a caring bridge site for a boy with a mitochondrial disorder with defects in Complexes I and III, same as Lydia. It was very encouraging to see how well he is doing. Let me make this clear, so that there are no false expectations...even though they have defects in the same complexes, it doesn't mean that their symptoms or outcome would be the same. Dr Superneau describes it like this....think of the complexes as offices. We know from Lydia's tests that Office I and Office III are not putting out efficient work, but science has not advanced enough to get into the offices to find out which "worker" is causing the problem. So, this little boy's "problem workers" may not be the same as Lydia's, which means that their presentation of the disease and symptoms and control of those may be different. With that said, this is the first case that I have come across with even the same complexes involved. Most that I have seen have only one complex involved. Anyway, you will be amazed at how well this little boy is doing, and any encouragement is wonderful.
I emailed his mom with a brief description of Lydia and her issues and these questions:
When was he diagnosed?
Who is his doctor?
Do you see a mito specialist regularly?
How old is he now?
What symptoms did/does he have?
When did you start to see improvements?
What improvements have you seen?
What has been his prognosis?
Has he exceeded any of the doctors’ expectations?
This was her response:
"Well, our paths sound similar! I will let you check out the "My story" section on his Caring Bridge site (www.caringbridge.org/visit/calebryankelso) for the specifics.
We first heard the term Mitochondrial Disease when he was almost 9 months old. Thanksgiving Day 2005.
Dr Shoffner did his muscle BX, but we see a local mito doc (Dr Hainline) here in Indiana about every 6 months.
He turned 3 in March and right now we deal with reflux and constipation. Along with some developmentally delay and some speech delay. He runs only about 6 months behind.
We started seeing improvements about 3 weeks after starting the cocktail (CoQ10, Riboflavin and Carnitine). And the improvements have been HUGE!!!! And quick at coming. He started smiling again on 12-15-2005 and by New Years Day he was rolling over. He has exceeded ALL of the doctors expectations, and they still look at him with their mouth hanging open.
He is completely potty trained (for about a month now) and we started the process right at his third birthday. So it took about 3 months total for complete training. Not too bad!!!
As with most mito patients, they don't say much about his prognosis. Simply because they just don't know. He is doing well, but that can change any given day. We try to keep him healthy and we make sure he is always WELL hydrated and fed. Caleb is our miracle. They don't know why he made such huge progress and for, all intents and purposes, is now a normal little 3 yr old. We had LOTS of prayer from around the world and wonderful therapists. I stayed home to work with him and we worked CONSTANTLY on what the therapists suggested."
Just wanted to share this encouragement with you. I've been telling Martin lately that I feel like Lydia will walk one day...I can actually visualize her doing it. I see her standing at a little walker, with her head tilted to one side (like she often does) and with that "this is hard, but I'm determined to do it" look on her face...taking small, difficult steps. I just see her as a hard worker. We have been so proud of all that she has accomplished so far. She is such a little trooper. Everytime we have our 30-45 minute medicine sessions, I tell her how proud I am of her...it's terrible for her, but she gets through it. She is an inspiration to many of us. What a precious gift! Thank you God for putting our little Lydia into our lives!
Thursday, July 3, 2008
First Roll!
Thanks for the prayers for good weather at the beach...after my last post, it was storming....in just a couple of hours we were back at the beach! We had a good time....a bit of bad news: Audrey was stung by a jellyfish. She was with her dad and granny...in hindsight, I'm glad I wasn't there...her dad said she maintained a screaming cry for about 30 minutes...probably too much for mom's heart. :) They took good care of her, and she was fine by the time they got back to the room. A bit of good news: While they were on the beach, Lydia woke up from a nap...I could hear her "talking," so I went to check on her....she had rolled over!!! That was the first time ever, by herself!!! She hasn't done it again since then, but I think it is only a matter of time.
Appt with the surgeon is set for Monday. Hopefully, plans for the G-tube will progress quickly. I was a bit down in the dumps yesterday....I weighed her for the first time in about a week...she had lost weight. She is now at 14 lbs. 11 oz. We also got her CoQ10 in, so she is on a very full med schedule...with her added antibiotic for the UTI, she is taking 13 doses of medicine per day. She is getting pretty tired of it, pretty quickly...so am I. I feel so sorry for her...I understand why she hates it so much. One good thing is that she has not reacted any more adversely to the CoQ10 than any other medicine....I had been told that the taste would be so bad that we may have to add it to fruit juice or yogurt or something (which would be another fight). Lydia doesn't seem to have a taste preference...she pretty much can't stand to have anything in her mouth...it doesn't matter if it is strong, bad-tasting medicine or tasty banana pudding, her reaction is the same. At least the G-tube will make giving medicines easier. I won't have to worry about upsetting her with taking medicines or that she is getting the full amount (since she often spits out plenty of it.)
She is now on the full dose of the Keppra (seizure medicine)...since Monday...so, please pray that she does not have any more seizures. She hasn't had any since the one last week.
I had been told by other parents of mito kids that we would see a huge difference when we started the CoQ10...more awake and alert time, more stamina, etc. So far, we haven't seen that. In fact, she has maybe been even more tired the last couple of days. Of course, she's only been taking it since Tuesday...so, I won't give up hope yet.
Those of you who visited the website, Jude's Mito Journey that I mentioned in another post...might have seen the Fais-Do-Do that was advertised. It is a fund-raising event in Sulfur, LA organized by Jude's mother to raise money for mitochondrial disease research...the money goes straight to the United Mitochondrial Disease Foundation. Martin and I have plans to attend. You can visit http://www.judesmitojourney.com/fundraiser.htm for more information if you are interested. It is an adult-only event...only kids with mito are invited to attend. If you would like to purchase tickets, you can go to http://www.kintera.org/faf/home/default.asp?ievent=277894. If you wish to make a donation to UMDF in Lydia's honor, we're asked to solicit donations during Mitochondrial Disease Awareness Week, which is September 21-27. An interesting fact in the email from Jude's mother: "If you measured the government's funded projects as a football field, mitochondrial research would account for about 3 inches of that field. "
Thank you all so very much for your continued prayers and support. We feel your love. God is so very good to us, and we praise Him for sending you all to us! I want to extend a very special THANK YOU with love to the eighth grade students and Ms. June Hebert at Holy Family School in Port Allen. We recently received a very special card with a special donation that they collected for Lydia during the school year. THANK YOU for remembering Lydia in your prayers this year and for sharing this gift with her. We are so very grateful!
Appt with the surgeon is set for Monday. Hopefully, plans for the G-tube will progress quickly. I was a bit down in the dumps yesterday....I weighed her for the first time in about a week...she had lost weight. She is now at 14 lbs. 11 oz. We also got her CoQ10 in, so she is on a very full med schedule...with her added antibiotic for the UTI, she is taking 13 doses of medicine per day. She is getting pretty tired of it, pretty quickly...so am I. I feel so sorry for her...I understand why she hates it so much. One good thing is that she has not reacted any more adversely to the CoQ10 than any other medicine....I had been told that the taste would be so bad that we may have to add it to fruit juice or yogurt or something (which would be another fight). Lydia doesn't seem to have a taste preference...she pretty much can't stand to have anything in her mouth...it doesn't matter if it is strong, bad-tasting medicine or tasty banana pudding, her reaction is the same. At least the G-tube will make giving medicines easier. I won't have to worry about upsetting her with taking medicines or that she is getting the full amount (since she often spits out plenty of it.)
She is now on the full dose of the Keppra (seizure medicine)...since Monday...so, please pray that she does not have any more seizures. She hasn't had any since the one last week.
I had been told by other parents of mito kids that we would see a huge difference when we started the CoQ10...more awake and alert time, more stamina, etc. So far, we haven't seen that. In fact, she has maybe been even more tired the last couple of days. Of course, she's only been taking it since Tuesday...so, I won't give up hope yet.
Those of you who visited the website, Jude's Mito Journey that I mentioned in another post...might have seen the Fais-Do-Do that was advertised. It is a fund-raising event in Sulfur, LA organized by Jude's mother to raise money for mitochondrial disease research...the money goes straight to the United Mitochondrial Disease Foundation. Martin and I have plans to attend. You can visit http://www.judesmitojourney.com/fundraiser.htm for more information if you are interested. It is an adult-only event...only kids with mito are invited to attend. If you would like to purchase tickets, you can go to http://www.kintera.org/faf/home/default.asp?ievent=277894. If you wish to make a donation to UMDF in Lydia's honor, we're asked to solicit donations during Mitochondrial Disease Awareness Week, which is September 21-27. An interesting fact in the email from Jude's mother: "If you measured the government's funded projects as a football field, mitochondrial research would account for about 3 inches of that field. "
Thank you all so very much for your continued prayers and support. We feel your love. God is so very good to us, and we praise Him for sending you all to us! I want to extend a very special THANK YOU with love to the eighth grade students and Ms. June Hebert at Holy Family School in Port Allen. We recently received a very special card with a special donation that they collected for Lydia during the school year. THANK YOU for remembering Lydia in your prayers this year and for sharing this gift with her. We are so very grateful!
Sunday, June 29, 2008
An Adventurous Trip
We are still here in Florida...having a good time in the condo...storming outside! We had a great time yesterday at the beach and the pool...the weather was great! The adventure started with our trip here...I think we are the first family to take 15 hours to get from Baton Rouge to Florida. Here's the story...we took our time...stopping to eat, shop a little...stop again to feed Lydia...THEN...we noticed that Lydia had a little vaginal discharge when we changed her diaper...and I remembered that I had seen a little that morning too. I called the Baton Rouge Clinic to get advice about it because that is how her first urinary tract infection started. Dr Ramey suggested that we should take her to some after-hours clinic or something...he said that with her mito diagnosis...we shouldn't chance it. We went to a children's hospital in Mobile...we waited and waited and waited! And, just as we thought. She did have a UTI. We got a prescription for an antibiotic and proceeded to head to the beach. We arrived at the condo at about 2:30 am. It was quite a trip! We were all very tired....and disappointed that we didn't get here sooner, but we were glad that we checked it out. We just can't chance anything with her now. Her appetite was a little decreased yesterday, but she seems to be eating well today. No fever...and she seems happy. We'll head home tomorrow...please pray that this storm blows over...it is getting pretty bad.
Friday, June 27, 2008
Good News
We saw the cardiologist this morning, and he said that Lydia's heart looks perfectly normal....structure and function. Yeah! They did an EKG and an ultrasound of her heart, and both were normal. He wants to follow her periodically to be sure that it continues to be healthy. We will see him again in a year.
A bit of not-so-good news:
Lydia had another seizure Wednesday night. Her heart-breaking cry afterwards lasted 20 minutes. I talked to Dr Hollman about it, and she said that she is not concerned about the seizure right now because she is still not up to her full dose of the seizure medication. We are on the second increment right now...she said that if Lydia has a seizure after she is on the full dose for at least a week...we should let her know.
Now...we're off to the beach!!!!
A bit of not-so-good news:
Lydia had another seizure Wednesday night. Her heart-breaking cry afterwards lasted 20 minutes. I talked to Dr Hollman about it, and she said that she is not concerned about the seizure right now because she is still not up to her full dose of the seizure medication. We are on the second increment right now...she said that if Lydia has a seizure after she is on the full dose for at least a week...we should let her know.
Now...we're off to the beach!!!!
Tuesday, June 24, 2008
The Latest...
I'm sorry it has been so long since I've updated...we have been crazy busy lately!! I am keeping a log of all of the phone calls that I have to make on a daily basis with each response I get...I don't trust my brain to keep it all....doctors, insurance companies, etc. I'll try to re-cap some of the info from the last several days:
Phone conversation with Dr Alberty (GI):
Martin and I decided to move forward with plans for the G-tube. I called Dr Hollman Monday morning and told her not to worry about coordinating with Lydia's other dr's...we feel like it is the right call. After looking over Lydia's notes from the last month, I realized that she has not gained a single ounce since June 1st. That hit home. That coupled with the medicine struggle made the decision pretty clear this time. So.....I called Dr Alberty Monday morning...he agreed that it was the best idea. He said that in dealing with mito patients, nutrition is often a concern....he said that we want to maximize her brain function and functions of all her cells, so we want to take nutrition out of the equation. We want to be sure that we are doing everything in that regard to give her the best life possible. He also said that mito patients need more calories in order to gain weight than typical kids. That explains why she has not gained in the last few weeks even though she has still been eating well (until recently, anyway). So, the plan is to get the G-tube and then schedule an appt with him to discuss the plan for nutrition. We will probably do night-feeds, which means that she will eat as usual during the day...then, at night we will hook her up to a machine to supplement feeding while she sleeps. That way, we won't supress her hunger during the day, and she will still eat as she usually does.
I called to schedule an appt with the surgeon, but I need to follow-up on that tomorrow. I wanted to schedule an appt for Lydia and Elise together....Elise has a little skin tag on her bottom that we saw a surgeon about several months ago...he wanted us to come back in a few months. Well, another surgeon was highly recommended by a couple of friends so I wanted to switch. The receptionist said that they had to ok it with the first surgeon before they could schedule the appt....still waiting to hear back from them.
I was a little worried about Lydia today because she seemed to be more tired than usual...maybe even a little lethargic. We'll keep a close eye on it, but I think it is because we just started the second round of upping the Keppra (seizure med) last night. She is now at 1 ml twice a day...next week, she goes up to 1.5 ml twice a day and that is what she will take from then on out. Both Susan and our Blue Cross Nurse Case Manager told me that it takes about 2-3 weeks for kids to get accustomed to taking a seizure med and that it is perfectly normal for her to be a little less alert. Susan said that it is because it relaxes the central nervous system...makes sense. We've noticed in the past week that she doesn't smile quite as much and seems a little more "out of it." Hopefully after her body gets used to the med, we will see her get back to normal. Tonight seems better though....she is vocalizing a lot and seemed to be "playing" with Elise earlier. She is really responding better to her lately. They have a little bond now.
NO SEIZURES since the three last Monday!!!!!!
Pushing up her upper body while on her belly seems to be getting easier and easier! You wouldn't believe it...I'll have catch a shot of it. She gets her head way up in the air and she does it all by herself...without me putting her up on her hands. That is great news!!! Any progress is encouraging! She has her own little cheering section here too...it's fun! If Martin, Audrey or I see her doing it, we yell at each other to come see, and we all cheer her on. Even Elise will point at her and laugh and say, "Yiya." That's "Eliseeze" for Lydia. Our newest trick is to put her on her belly on one of our small throw pillows on our bed....she'll lean to one side and accidentally roll (or fall) to her back....we all cheer and she smiles every time. We figure that if she feels that motion enough, she'll feel confident enough to do it on her own on a flat surface. We'll keep trying!
Lydia has also been doing a much better job of prop-sitting...resting her hands on her legs and sitting up. I usually have her do it in my lap....last night we counted 46 seconds!!!! That's big!!!
Susan and I talked yesterday about Dr Hollman's prediction about not talking or walking. She agreed that most kids she has seen with myopathy do not talk. (Lydia has encephalomyopathy...which basically means brain and muscle weakness.) But, she said that she has had success with some kids in a walker. She had one patient that started in a walker at 18 month....he didn't have the balance reaction to walk alone....and he still walks with the walker at 7 years old, but he gets himself around pretty good. We will consider that a possible option for Lydia. She noticed that she does move her feet alternatively when you stroke the tops of her feet, so that is encouraging. It may be a pre-cursor to crawling and/or walking.
Lydia has an appt with a pediatric cardiologist Thursday afternoon...Dr. Crapazano. Please pray that we get good news.
I will be working the next couple of days...and we leave for a much needed vacation on Friday! Big Thanks to Ms Hilda for taking us to the beach!!! Yeah! We'll be hanging out with the Poche family for the weekend. So....I expect to update again early next week.
Phone conversation with Dr Alberty (GI):
Martin and I decided to move forward with plans for the G-tube. I called Dr Hollman Monday morning and told her not to worry about coordinating with Lydia's other dr's...we feel like it is the right call. After looking over Lydia's notes from the last month, I realized that she has not gained a single ounce since June 1st. That hit home. That coupled with the medicine struggle made the decision pretty clear this time. So.....I called Dr Alberty Monday morning...he agreed that it was the best idea. He said that in dealing with mito patients, nutrition is often a concern....he said that we want to maximize her brain function and functions of all her cells, so we want to take nutrition out of the equation. We want to be sure that we are doing everything in that regard to give her the best life possible. He also said that mito patients need more calories in order to gain weight than typical kids. That explains why she has not gained in the last few weeks even though she has still been eating well (until recently, anyway). So, the plan is to get the G-tube and then schedule an appt with him to discuss the plan for nutrition. We will probably do night-feeds, which means that she will eat as usual during the day...then, at night we will hook her up to a machine to supplement feeding while she sleeps. That way, we won't supress her hunger during the day, and she will still eat as she usually does.
I called to schedule an appt with the surgeon, but I need to follow-up on that tomorrow. I wanted to schedule an appt for Lydia and Elise together....Elise has a little skin tag on her bottom that we saw a surgeon about several months ago...he wanted us to come back in a few months. Well, another surgeon was highly recommended by a couple of friends so I wanted to switch. The receptionist said that they had to ok it with the first surgeon before they could schedule the appt....still waiting to hear back from them.
I was a little worried about Lydia today because she seemed to be more tired than usual...maybe even a little lethargic. We'll keep a close eye on it, but I think it is because we just started the second round of upping the Keppra (seizure med) last night. She is now at 1 ml twice a day...next week, she goes up to 1.5 ml twice a day and that is what she will take from then on out. Both Susan and our Blue Cross Nurse Case Manager told me that it takes about 2-3 weeks for kids to get accustomed to taking a seizure med and that it is perfectly normal for her to be a little less alert. Susan said that it is because it relaxes the central nervous system...makes sense. We've noticed in the past week that she doesn't smile quite as much and seems a little more "out of it." Hopefully after her body gets used to the med, we will see her get back to normal. Tonight seems better though....she is vocalizing a lot and seemed to be "playing" with Elise earlier. She is really responding better to her lately. They have a little bond now.
NO SEIZURES since the three last Monday!!!!!!
Pushing up her upper body while on her belly seems to be getting easier and easier! You wouldn't believe it...I'll have catch a shot of it. She gets her head way up in the air and she does it all by herself...without me putting her up on her hands. That is great news!!! Any progress is encouraging! She has her own little cheering section here too...it's fun! If Martin, Audrey or I see her doing it, we yell at each other to come see, and we all cheer her on. Even Elise will point at her and laugh and say, "Yiya." That's "Eliseeze" for Lydia. Our newest trick is to put her on her belly on one of our small throw pillows on our bed....she'll lean to one side and accidentally roll (or fall) to her back....we all cheer and she smiles every time. We figure that if she feels that motion enough, she'll feel confident enough to do it on her own on a flat surface. We'll keep trying!
Lydia has also been doing a much better job of prop-sitting...resting her hands on her legs and sitting up. I usually have her do it in my lap....last night we counted 46 seconds!!!! That's big!!!
Susan and I talked yesterday about Dr Hollman's prediction about not talking or walking. She agreed that most kids she has seen with myopathy do not talk. (Lydia has encephalomyopathy...which basically means brain and muscle weakness.) But, she said that she has had success with some kids in a walker. She had one patient that started in a walker at 18 month....he didn't have the balance reaction to walk alone....and he still walks with the walker at 7 years old, but he gets himself around pretty good. We will consider that a possible option for Lydia. She noticed that she does move her feet alternatively when you stroke the tops of her feet, so that is encouraging. It may be a pre-cursor to crawling and/or walking.
Lydia has an appt with a pediatric cardiologist Thursday afternoon...Dr. Crapazano. Please pray that we get good news.
I will be working the next couple of days...and we leave for a much needed vacation on Friday! Big Thanks to Ms Hilda for taking us to the beach!!! Yeah! We'll be hanging out with the Poche family for the weekend. So....I expect to update again early next week.
Thursday, June 19, 2008
More News
I've been doing more and more research, little by little to learn more about Lydia's disorder...I don't like feeling lacking in knowledge. We are so lucky to have Dr Hollman. Although she has seen this rare disorder few times, she is so committed to helping us...she is making lots of phone calls to be sure that we are giving Lydia the best care. She called tonight to discuss some questions that I had. She gave a little more info as far as prognosis than Dr Superneau was willing to predict. She was very honest...which meant realistically negative. She said that based on Lydia's limited progress so far developmentally, she would predict that she will probably never walk or talk. She said that if Lydia is not walking by 7 or 8 years old, we can assume that she never will...the same is true of talking...if she is not saying much by age 7, we can assume that she probably never will. We both agreed that this prediction is not a reason to ever stop trying. She said that we should continue therapy and continue praying because God might grant us a little miracle....we know that He has given us reason to believe in His miracles. As far as life expectancy, she left that more open-ended. She said that Lydia may very well live a long happy life....or she might have an early death. There is no way to know that right now. Dr Superneau had explained to us yesterday that any illness could be serious and possibly life-threatening for her. For example, if she were to contract pneumonia, she would be at a higher risk for serious complications because her body does not have the ability to cough vigorously or to roll over to a more comfortable position or to sit up to avoid stuff settling in her lungs. Basically, this means that we have to take extra precautions so that she does not get sick. Even minor illnesses to typical children could send her to the doctor or hospital. Recommendations have been to avoid any person who might have any type of illness.
Dr Hollman is going to call Dr Wood and Dr Alberty to discuss with them the decision of pursuing the G-tube. I like the idea of all of her doctors talking together about it so that we can make an informed decision. We talked tonight about the importance of staying hydrated and well-nourished...we all know how Lydia refuses to eat when she is sick or has some type of distress going on. What I'm learning is that the fasting could lead to metabolic stress, which (from what I understand) means that her cells have difficulty functioning because they are not getting what they need...especially since the energy source (the mitochondria) are not doing their jobs. Dr Superneau also told us yesterday that her brain and muscles are most affected because they are the systems that require the most energy.
Dr Hollman is also going to call Dr Shoffner to gather more info to share with us. Dr Shoffner's practice is not to speak with families over the phone...and he is actually not making follow-up appts anymore either...he only speaks with physicians to make recommendations...he is so busy with the lab and diagnostics.
More sites that I found helpful today:
http://www.umdf.org/atf/cf/{28038C4C-02EE-4AD0-9DB5-D23E9D9F4D45}/Mitochondria-An_Overview.pdf
(An article that provides an overview of Mitochondria and how they work... and don't work)
http://www.boston.com/partners/worldnow/necn.html?catID=85603&clipid=1022185&autoStart=true&mute=false&continuous=true
(a news clip that overviews mitochondrial disorder...a family story and an interview with a doctor)
About Elise....
Dr Shoffner said in March that he felt it very likely that Lydia and Elise's conditions were related. He is now awaiting ok from our insurance company to begin further testing of Lydia's cells....DNA sequencing to determine how Lydia inherited the condition...which may shed light on affects to others in our family. Dr Superneau, on the other hand, believes that Lydia and Elise's condition are two entirely different entities. The reason: Elise has some different facial features which are considered dysmorphisms...which means different (not abnormal or "sticking out in a crowd")...just different from our family...small, spaced teeth, large forehead, bridge between her eyes, spaced eyes, inward turned toes....this makes Dr Superneau think that her condition may be chromosomal. His thoughts are this: If Lydia and Elise have the same condition, and Lydia's condition is more severe, then she should have more severe dysmorphisms...but, Lydia does not have any dysmorphisms....so, he thinks their conditions are unrelated. Our next plan for her is to do a chromosomal micro-array (sp?) to further test for chromosomal syndromes. She has been tested for different syndromes in the past and all have been normal, but this test is a new advancement in medicine, so it won't hurt to test her just in case...it is a simple blood test.
That is all for now....my brain has much more than this...it comes back to me in bits and pieces...I will try to share as it comes. Thank you all so much for your prayers and concern and your notes of love and prayers. Please know that it all touches my heart and the lives of all of us!
Dr Hollman is going to call Dr Wood and Dr Alberty to discuss with them the decision of pursuing the G-tube. I like the idea of all of her doctors talking together about it so that we can make an informed decision. We talked tonight about the importance of staying hydrated and well-nourished...we all know how Lydia refuses to eat when she is sick or has some type of distress going on. What I'm learning is that the fasting could lead to metabolic stress, which (from what I understand) means that her cells have difficulty functioning because they are not getting what they need...especially since the energy source (the mitochondria) are not doing their jobs. Dr Superneau also told us yesterday that her brain and muscles are most affected because they are the systems that require the most energy.
Dr Hollman is also going to call Dr Shoffner to gather more info to share with us. Dr Shoffner's practice is not to speak with families over the phone...and he is actually not making follow-up appts anymore either...he only speaks with physicians to make recommendations...he is so busy with the lab and diagnostics.
More sites that I found helpful today:
http://www.umdf.org/atf/cf/{28038C4C-02EE-4AD0-9DB5-D23E9D9F4D45}/Mitochondria-An_Overview.pdf
(An article that provides an overview of Mitochondria and how they work... and don't work)
http://www.boston.com/partners/worldnow/necn.html?catID=85603&clipid=1022185&autoStart=true&mute=false&continuous=true
(a news clip that overviews mitochondrial disorder...a family story and an interview with a doctor)
About Elise....
Dr Shoffner said in March that he felt it very likely that Lydia and Elise's conditions were related. He is now awaiting ok from our insurance company to begin further testing of Lydia's cells....DNA sequencing to determine how Lydia inherited the condition...which may shed light on affects to others in our family. Dr Superneau, on the other hand, believes that Lydia and Elise's condition are two entirely different entities. The reason: Elise has some different facial features which are considered dysmorphisms...which means different (not abnormal or "sticking out in a crowd")...just different from our family...small, spaced teeth, large forehead, bridge between her eyes, spaced eyes, inward turned toes....this makes Dr Superneau think that her condition may be chromosomal. His thoughts are this: If Lydia and Elise have the same condition, and Lydia's condition is more severe, then she should have more severe dysmorphisms...but, Lydia does not have any dysmorphisms....so, he thinks their conditions are unrelated. Our next plan for her is to do a chromosomal micro-array (sp?) to further test for chromosomal syndromes. She has been tested for different syndromes in the past and all have been normal, but this test is a new advancement in medicine, so it won't hurt to test her just in case...it is a simple blood test.
That is all for now....my brain has much more than this...it comes back to me in bits and pieces...I will try to share as it comes. Thank you all so much for your prayers and concern and your notes of love and prayers. Please know that it all touches my heart and the lives of all of us!
Wednesday, June 18, 2008
Treatment Plan
We met with Dr Superneau this morning, and received a lot of information....most of which I can probably not explain, understand, or even remember...lots of biochemistry. To further understand what mitochondrial disorders are, visit Dr Shoffner's site: http://www.medicalneurogenetics.com/ He has a portal for patients that has some helpful info and some great links. United Mitochondrial Disease Foundation (http://www.umdf.org/) has great information. I've also been in contact with an extrordinary mother of a child with mito disorder...she has a great website for him at http://www.judesmitojourney.com/ Hopefully, these resources will help you and me to understand the disorder better. For specifics about Lydia's disorder, here is a picture of the conclusions page of her diagnosis report:
We didn't get much info from Dr Superneau today about expectations for Lydia's future....basically, the disorder is rare and her specific affected areas (Complex I and III) are even more rare so that there is no baseline or "typical" mito kid. We can't predict her future because every mito patient is different. We basically just have to wait and see how she develops and if she will become stagnant at any certain age or regress at any certain age or continue to progress....there is no way of knowing right now. As for now, we will continue to pray, attend therapy, see all of her current doctors plus a cardiologist to be sure that her heart is not affected, and to begin supplemental vitamins/medicines. She will begin taking CoQ10 and LCarnitine as soon as we can get them ordered. After being on these for 2-3 months, she will have a blood test to determine how it is being absorbed by her body,and then we will probably add creatine to her medicine cocktail.
My mind is a bit of a whirlwind right now...having trouble gathering and completing thoughts. I'll try to add more info as it comes to me. As always, thank you for continued prayers.
Tuesday, June 17, 2008
Seizures
Last night was difficult...Lydia had two seperate seizures and cried for a while in between...she was clearly very uncomfortable. I called Dr Hollman about it today. She said that the crying and limb-shaking was probably post-seizure activity. She said, "It just makes her feel bad." NO SEIZURES TODAY!!! She seemed mostly back to herself...though she slept a little more than usual...which is already a lot. I also talked to Dr Hollman about the possibility of discussing a feeding tube again...if only for the reason of medication. She now takes 5 doses of medication today...for thyroid, reflux, and seizures. She will probably add at least 2 new meds with the mito diagnosis. Medications by mouth are not a fun thing for Lydia...she usually gags, gasps, chokes, etc. Martin and I agree that a feeding tube would make that much easier, not to mention that we could also supplement her nutrition. Dr Hollman agreed that it was reasonable. She said that she didn't consider it inevitable (which would make the decision much easier), but she said that she would support the decision if we were comfortable with it. We'll add that to our list of questions for Dr Superneau tomorrow and follow-up with Dr Alberty and a surgeon if we decide to move forward with it.
Our appt with Dr Superneau is at 8:00...I'll try to post an update by the afternoon. Thanks for keeping us in your thoughts.
Our appt with Dr Superneau is at 8:00...I'll try to post an update by the afternoon. Thanks for keeping us in your thoughts.
Monday, June 16, 2008
A Diagnosis
Positive for Mitochondrial Disorder
Negative for Rett Syndrome
We had an appt scheduled with Dr Hollman this morning after therapy. She did not have the results yet when we went to see her. We discussed some little episodes that Lydia had been having in the last couple of weeks...leg jerks, loud yells that are not characteristic of her cry (and for no apparent reason)...then, this morning she had what Martin and I were pretty sure was a seizure. I was holding her....her whole body started to tremble, and she had a frightened look in her eyes, and she let out a couple of short loud cries (about 10-15 seconds altogether). Dr Hollman determined that all of those little episodes were probably seizures, so she decided to put her on a seizure medication...Keppra. She will take it twice a day and we will start with a small dose and increase gradually to a full dose (1.5 ml). Lydia's head growth continued to slow down...it fell even more off the chart this visit. Dr Hollman was very concerned with her lack of development...though she was glad that she has shown some progress...she picked her head up for her while we were there.
About 30 minutes ago (at about 3:00), Dr Hollman called us because they just received a fax of the results from Atlanta. We were both relieved that it was not Rett. She said that she didn't have a chance to really look into the report in depth...she wanted to call me right away. There was no specific name for the mitochondrial disorder that she saw. She listed a few of the symptoms...some big words that were Greek to me....I figured we'd get more info about it when we meet with Dr Superneau. I asked her where it fell on the spectrum...she said, "severe." I asked her if it all added up to her..with what she knows about Lydia's symptoms....she said, "it makes perfect sense." She wants us to see Dr Superneau to discuss the report in depth and then follow-up with her by phone. She wants us to continue the plan for the Keppra and to add another medication for Lydia, but she wants to get together with Dr Superneau first so that they can discuss it.
We have an appt Wednesday morning with Dr Superneau to discuss the report and expected outcome. After we meet with him, we will decide if we want to make another appt with Dr Shoffner in Atlanta for further clarification.
Thank you for keeping us all in your thoughts and prayers.
Negative for Rett Syndrome
We had an appt scheduled with Dr Hollman this morning after therapy. She did not have the results yet when we went to see her. We discussed some little episodes that Lydia had been having in the last couple of weeks...leg jerks, loud yells that are not characteristic of her cry (and for no apparent reason)...then, this morning she had what Martin and I were pretty sure was a seizure. I was holding her....her whole body started to tremble, and she had a frightened look in her eyes, and she let out a couple of short loud cries (about 10-15 seconds altogether). Dr Hollman determined that all of those little episodes were probably seizures, so she decided to put her on a seizure medication...Keppra. She will take it twice a day and we will start with a small dose and increase gradually to a full dose (1.5 ml). Lydia's head growth continued to slow down...it fell even more off the chart this visit. Dr Hollman was very concerned with her lack of development...though she was glad that she has shown some progress...she picked her head up for her while we were there.
About 30 minutes ago (at about 3:00), Dr Hollman called us because they just received a fax of the results from Atlanta. We were both relieved that it was not Rett. She said that she didn't have a chance to really look into the report in depth...she wanted to call me right away. There was no specific name for the mitochondrial disorder that she saw. She listed a few of the symptoms...some big words that were Greek to me....I figured we'd get more info about it when we meet with Dr Superneau. I asked her where it fell on the spectrum...she said, "severe." I asked her if it all added up to her..with what she knows about Lydia's symptoms....she said, "it makes perfect sense." She wants us to see Dr Superneau to discuss the report in depth and then follow-up with her by phone. She wants us to continue the plan for the Keppra and to add another medication for Lydia, but she wants to get together with Dr Superneau first so that they can discuss it.
We have an appt Wednesday morning with Dr Superneau to discuss the report and expected outcome. After we meet with him, we will decide if we want to make another appt with Dr Shoffner in Atlanta for further clarification.
Thank you for keeping us all in your thoughts and prayers.
Thursday, June 12, 2008
No Results
I called Atlanta yesterday...the receptionist said that the results were not ready. She said that because sometimes the tests take a full 12 weeks, it may take another week for Dr Shoffner to interpret results and write the report. At that point, they will mail a copy of the 30-page report to us and to each of Lydia's doctors. We will then meet with either Dr Hollman or Dr Superneau to discuss the results. If we so choose, we could also schedule an appt with Dr Shoffner in Atlanta to discuss management of the disorder with him. I will call again next Wednesday if we have not received anything by then.
Lydia's picky eating continued this week...though she did take 1 1/2 oz from Martin on Tues and 2 1/2 oz from him today. We like to celebrate small accomplishments! We will continue letting him feed her sometimes so that she hopefully learns that variety is ok...and that she gets out of her "mommy-has-to-do-it" pattern.
Martin and the girls had a great week...a busy schedule, but he seemed to handle it with ease. I think they had a good time. :)
Lydia's picky eating continued this week...though she did take 1 1/2 oz from Martin on Tues and 2 1/2 oz from him today. We like to celebrate small accomplishments! We will continue letting him feed her sometimes so that she hopefully learns that variety is ok...and that she gets out of her "mommy-has-to-do-it" pattern.
Martin and the girls had a great week...a busy schedule, but he seemed to handle it with ease. I think they had a good time. :)
Monday, June 9, 2008
Busy, Busy!
Audrey's swim lessons have come to a close. She had one semi-scared day in the water last week, but she did well most of the other days. Then, we had family day on Friday...all of a sudden, she turned into a different little swimmer. Maybe the comfort of mom and dad in the pool with her made the difference. She was going under water...and loving it! She also started to swim on top of the water during the last 10 minutes or so. I can't wait to swim with her again so that she can get more practice. Elise had a fine time in the pool too. It was a fun day! Thanks to Grandma for cooking us a delicious crawfish bisque lunch! And Papa and Maw-Maw Grace also came to watch the big swim!
Thanks Granny for giving Martin and me a much-needed night out this weekend. We went to Sullivan's with a gift card that we got for Christmas...better late than never! Neither of us could remember the last time we had been out together alone! It was nice to actually be able to talk to each other without interruptions. We had a great time!
This week is a work week for me. I work at the technology lab doing professional development trainings 9 days this summer...this week (M- Th) is my first training for the summer. It was a little stressful today....Lydia has decided once again that she will only eat for her mommy. It is a little different this time...it used to be that when other people tried to feed her, she wasn't able to suck as well, and so, didn't get as much formula in in a feeding. Well...that is not the problem now...she is just flat-out refusing to eat (turning her head) when anyone else tries to feed her. As soon as she is handed over to me, she will down 4-5 oz. Today, Martin and her OT (Terry) tried to feed her, and she absolutely would not eat. I had to come home at my lunch break just to get her to at least take one bottle for the day. Then, even I got her to barely take less than 4 oz. I think she just got used to refusing the bottle today. I pray that this does not continue for the rest of the week. I want her to learn that mommy is not the only person who can feed her.
Wednesday will be the 12-week mark for Lydia's biopsy. We decided that we will call Atlanta then if we do not hear from them by then.
Thanks for your continued prayers. Love to all!
Thanks Granny for giving Martin and me a much-needed night out this weekend. We went to Sullivan's with a gift card that we got for Christmas...better late than never! Neither of us could remember the last time we had been out together alone! It was nice to actually be able to talk to each other without interruptions. We had a great time!
This week is a work week for me. I work at the technology lab doing professional development trainings 9 days this summer...this week (M- Th) is my first training for the summer. It was a little stressful today....Lydia has decided once again that she will only eat for her mommy. It is a little different this time...it used to be that when other people tried to feed her, she wasn't able to suck as well, and so, didn't get as much formula in in a feeding. Well...that is not the problem now...she is just flat-out refusing to eat (turning her head) when anyone else tries to feed her. As soon as she is handed over to me, she will down 4-5 oz. Today, Martin and her OT (Terry) tried to feed her, and she absolutely would not eat. I had to come home at my lunch break just to get her to at least take one bottle for the day. Then, even I got her to barely take less than 4 oz. I think she just got used to refusing the bottle today. I pray that this does not continue for the rest of the week. I want her to learn that mommy is not the only person who can feed her.
Wednesday will be the 12-week mark for Lydia's biopsy. We decided that we will call Atlanta then if we do not hear from them by then.
Thanks for your continued prayers. Love to all!
Monday, June 2, 2008
Our updates
Lydia is still doing well...happy and so easy-going! She had PT with Susan this morning, but I missed most of it because I was with Elise and her OT, Laura. Since it was the first time she has seen Elise in a while, I wanted to catch up with her and let her do an evaluation for Elise to assess her skills. It went great! I told her of the things that have made us most proud in the last couple of days. Yesterday, Elise got into her car seat and actually buckled 2 of the three buckles all by herself...that is really big!! We were so proud of her, but probably not quite as proud as she was of herself...she was grinning ear to ear! Then, this morning...she was playing in Lydia's room (still in her PJ's) so I threw her dress to her and said, "Take off your pj's and put on your "day-dress'." We do this fairly often, and she usually tries for a minute, then gets distracted...and we usually come in and help her to get dressed. Well, today...when I threw her the dress, I went back into the living room to feed Lydia. Elise, all by herself!, took off her pj shirt and shorts...walked into her room and put them in the hamper...walked back into Lydia's room and put on her dress...she, of course, came strutting into the living room to show off what she had done...with such a look of accomplishment. Audrey and I raved and cheered at what she had done! Then, I told her to go to put her sandals on. So, she went to the shoe closet....took out her sandals...brought them to the living room and put them on all by herself! I felt like she had grown up over night! She has been practicing dressing herself and putting on shoes for a few months now, but she has not been this consistent...it is exciting!
We also started a new technique with Elise today to try to desensitize her. Elise has some minor tactile sensory issues...she does not like playdough or sand or anything that feels different to her. She is getting better with dirt and grass...and we have gotten her to put play-forks and knives into playdough, but she refuses to touch it with her hands. The new technique is called brushing. Laura gave us a plastic brush with plastic bristles...we have to brush her arms and legs (including hands and feet) and her back with the brush every two hours while she is awake. Each time, we also have to stretch her joints. The process should take about 2 minutes each time. Elise was not sure about it at all when Laura did it at therapy today, but when we did it at home, she was much more accepting. Please pray that her willingness continues. The entire treatment is 2 weeks of the brushing every 2 hours.
Audrey's swim lessons continue to go well. She went under water the last two sessions!! Yeah Audrey!!! I am anxious to bring her tomorrow so that I can see for myself. She also went to gymnastics this evening...she did great! I think she is really good at it...she is a strong little cutie! She was hanging from one of the uneven bars....and moved herself all the way to the other side of it...I am amazed by her arm strength. The lady asked a couple of weeks ago if we wanted to let Elise try it out...I wasn't sure she was ready, but after I thought about it, I thought she might be able to do some of the things...and it would be great practice/therapy for her...so, I asked her today if she wanted to go to gymnastics with Audrey...she gave a definite "No!" Audrey started crying because she really wanted her to do it....but, that didn't convince her...not even a little bit...she was still a solid, "No!" I asked her again while we were watching Audrey, but she was not budging on her decision. We are definitely not going to force her to do it..but, maybe she'll change her mind once she gets a little more confidence.
Our latest great news for our family, financially...Lydia and Elise have both been approved for Medicaid coverage. That means doctor visits, prescriptions, therapy, medical transportation, etc. This is HUGE for our finances! The only disappointing factor is that Neurotherapy (our PT and OT's) do not accept Medicaid payments. There are other facilities that do accept it...so that brings with it another decision to be made...do we continue to pay for the excellent service we are getting- or do we attempt to get a referral for somewhere new??? Just when I think I've waded through the wave of decisions...here comes another to be made! I need guidance and I pray that God will lead me to decide what is best for Lydia and Elise and our entire family.
We are closing in on 11 weeks since Lydia's biopsy...it seems that the closer we get to a diagnosis, the more it is on my mind. The more I try not to think about it, the more I think about it. Now, I'm starting to think, "What if we don't get a diagnosis? What if they say...yes, we think it is mitochondrial, but we couldn't pin-point a specific disorder...?" I don't know how I would feel about that. I like the idea of having a diagnosis because it means that we'll have some idea of what to expect or what things to look for that we may not already know...but, Dr Hollman always says that 'no diagnosis' is better- because (as she puts it) every diagnosis in neurology is bad. Obviously, I am over-analyzing the situation...which will not help anything. I've been trying to tell myself lately, "Mandy, give your worries to God." I know that He can handle them much better than I can...and He will carry me through, over, under, around any worry that places itself in my path. There are no worries where there is God! I just have to let my heart speak to my head.
Thank you for your continued prayers.
We also started a new technique with Elise today to try to desensitize her. Elise has some minor tactile sensory issues...she does not like playdough or sand or anything that feels different to her. She is getting better with dirt and grass...and we have gotten her to put play-forks and knives into playdough, but she refuses to touch it with her hands. The new technique is called brushing. Laura gave us a plastic brush with plastic bristles...we have to brush her arms and legs (including hands and feet) and her back with the brush every two hours while she is awake. Each time, we also have to stretch her joints. The process should take about 2 minutes each time. Elise was not sure about it at all when Laura did it at therapy today, but when we did it at home, she was much more accepting. Please pray that her willingness continues. The entire treatment is 2 weeks of the brushing every 2 hours.
Audrey's swim lessons continue to go well. She went under water the last two sessions!! Yeah Audrey!!! I am anxious to bring her tomorrow so that I can see for myself. She also went to gymnastics this evening...she did great! I think she is really good at it...she is a strong little cutie! She was hanging from one of the uneven bars....and moved herself all the way to the other side of it...I am amazed by her arm strength. The lady asked a couple of weeks ago if we wanted to let Elise try it out...I wasn't sure she was ready, but after I thought about it, I thought she might be able to do some of the things...and it would be great practice/therapy for her...so, I asked her today if she wanted to go to gymnastics with Audrey...she gave a definite "No!" Audrey started crying because she really wanted her to do it....but, that didn't convince her...not even a little bit...she was still a solid, "No!" I asked her again while we were watching Audrey, but she was not budging on her decision. We are definitely not going to force her to do it..but, maybe she'll change her mind once she gets a little more confidence.
Our latest great news for our family, financially...Lydia and Elise have both been approved for Medicaid coverage. That means doctor visits, prescriptions, therapy, medical transportation, etc. This is HUGE for our finances! The only disappointing factor is that Neurotherapy (our PT and OT's) do not accept Medicaid payments. There are other facilities that do accept it...so that brings with it another decision to be made...do we continue to pay for the excellent service we are getting- or do we attempt to get a referral for somewhere new??? Just when I think I've waded through the wave of decisions...here comes another to be made! I need guidance and I pray that God will lead me to decide what is best for Lydia and Elise and our entire family.
We are closing in on 11 weeks since Lydia's biopsy...it seems that the closer we get to a diagnosis, the more it is on my mind. The more I try not to think about it, the more I think about it. Now, I'm starting to think, "What if we don't get a diagnosis? What if they say...yes, we think it is mitochondrial, but we couldn't pin-point a specific disorder...?" I don't know how I would feel about that. I like the idea of having a diagnosis because it means that we'll have some idea of what to expect or what things to look for that we may not already know...but, Dr Hollman always says that 'no diagnosis' is better- because (as she puts it) every diagnosis in neurology is bad. Obviously, I am over-analyzing the situation...which will not help anything. I've been trying to tell myself lately, "Mandy, give your worries to God." I know that He can handle them much better than I can...and He will carry me through, over, under, around any worry that places itself in my path. There are no worries where there is God! I just have to let my heart speak to my head.
Thank you for your continued prayers.
Wednesday, May 28, 2008
Appointments...
Conference with Ms Meg (Elise's speech teacher at BR Speech and Hearing)-Tues:
She said that Elise is doing very well...socializing well with the other kids. She said that Elise is probably the best of them all with trying to relate to and communicate with the other kids. Wow!! What a change from her disposition at Mother's Day Out?!? I think it makes a real difference that she feels that she is on the same level as the other kids there. Ms Meg said that she can only understand what Elise says if it is in context or if it is an immitation...not much of a surprise. I explained some of the tricks that I've noticed with Elise...hopefully that will help...one basic rule is to ignore the initial consonant sound because she almost always replaces it with an incorrect sound. That helps to figure out what she is saying sometimes. Ms Meg felt that they should continue to work on building language and vocabulary with Elise at school, which will balance nicely with Suzanne's new articulation therapy. We will lose Suzanne in August because Elise turns 3, and Early Steps ends at 3 yrs. old. So, Ms Meg and I also discussed the possibility of adding individual therapy for Elise there in August...if we don't get therapy from the school system. We'll have to make that decision soon.
Audrey's Swimming Lessons:
Going well! I think she is enjoying it...we stayed and watched today...she didn't seem very nervous at all...she did great! Elise and Lydia did well, watching too!
OT with Teresa:
We had our last visit with Teresa yesterday. She will not be seeing Lydia anymore because the drive for her is too much, especially with her family's demands of the summer. We are so thankful to her for all of the help, advice, prayers, and commitment that she offered to our family. Though we hate it, we understand that she has commitments to her own family too! :) Teresa has always been very good at pointing out Lydia's accomplishments and how far she has come. Yesterday, she talked alot about how Lydia has changed since we began seeing her. It is really nice to think about her progress...it makes me really proud of her! Beginning next week, we will see an OT at Neurotherapy Specialists....where we see Susan for PT...we will start with Terry probably on Monday. We will probably also start Speech for Lydia through Early Steps soon...after our Early Steps meeting next week.
Check-up with Dr Wood Today:
Can you believe that Lydia is already 9 months old?? I can hardly believe it myself! She, of course, did not reach any of the 9 mos. milestones, but we did share with Dr Wood that she is picking up her head a lot better. Her measurements: 14 lbs. 11 oz.- below 5th percentile; 25 inches long- below the 5th percentile; Head circumference- 15 3/4- 15 7/8 inches- still off the chart (below the 3rd percentile)...but, he noticed that it was not continuing to fall on the chart...from the last head measurement, it actually went up just a hair. That's encouraging. Dr Wood was very anxious to hear the news from Atlanta, and he raved, as he always does, about how cute Lydia is. She is usually a ham for him...she actually laughed when he checked her ears today.
Today marks the 10-week point from Lydia's biopsy....please continue to pray for her and all of us as we receive the news of her diagnosis.
She said that Elise is doing very well...socializing well with the other kids. She said that Elise is probably the best of them all with trying to relate to and communicate with the other kids. Wow!! What a change from her disposition at Mother's Day Out?!? I think it makes a real difference that she feels that she is on the same level as the other kids there. Ms Meg said that she can only understand what Elise says if it is in context or if it is an immitation...not much of a surprise. I explained some of the tricks that I've noticed with Elise...hopefully that will help...one basic rule is to ignore the initial consonant sound because she almost always replaces it with an incorrect sound. That helps to figure out what she is saying sometimes. Ms Meg felt that they should continue to work on building language and vocabulary with Elise at school, which will balance nicely with Suzanne's new articulation therapy. We will lose Suzanne in August because Elise turns 3, and Early Steps ends at 3 yrs. old. So, Ms Meg and I also discussed the possibility of adding individual therapy for Elise there in August...if we don't get therapy from the school system. We'll have to make that decision soon.
Audrey's Swimming Lessons:
Going well! I think she is enjoying it...we stayed and watched today...she didn't seem very nervous at all...she did great! Elise and Lydia did well, watching too!
OT with Teresa:
We had our last visit with Teresa yesterday. She will not be seeing Lydia anymore because the drive for her is too much, especially with her family's demands of the summer. We are so thankful to her for all of the help, advice, prayers, and commitment that she offered to our family. Though we hate it, we understand that she has commitments to her own family too! :) Teresa has always been very good at pointing out Lydia's accomplishments and how far she has come. Yesterday, she talked alot about how Lydia has changed since we began seeing her. It is really nice to think about her progress...it makes me really proud of her! Beginning next week, we will see an OT at Neurotherapy Specialists....where we see Susan for PT...we will start with Terry probably on Monday. We will probably also start Speech for Lydia through Early Steps soon...after our Early Steps meeting next week.
Check-up with Dr Wood Today:
Can you believe that Lydia is already 9 months old?? I can hardly believe it myself! She, of course, did not reach any of the 9 mos. milestones, but we did share with Dr Wood that she is picking up her head a lot better. Her measurements: 14 lbs. 11 oz.- below 5th percentile; 25 inches long- below the 5th percentile; Head circumference- 15 3/4- 15 7/8 inches- still off the chart (below the 3rd percentile)...but, he noticed that it was not continuing to fall on the chart...from the last head measurement, it actually went up just a hair. That's encouraging. Dr Wood was very anxious to hear the news from Atlanta, and he raved, as he always does, about how cute Lydia is. She is usually a ham for him...she actually laughed when he checked her ears today.
Today marks the 10-week point from Lydia's biopsy....please continue to pray for her and all of us as we receive the news of her diagnosis.
Monday, May 26, 2008
Great Weekend
We had a great time swimming at Grandma and Paw-Paw's house yesterday...a real treat to kick off the summer! Audrey started swimming lessons this morning...I realized yesterday at Grandma's pool that I have really overdone the "water safety" talk. All Audrey talked about was drowning, and she was afraid to do almost everything because she thought she might drown. She did loosen up after just a little while, but she told me today that she was scared at swimming lessons. I like her to have a little fear or respect of the water, but I don't want her to be petrified. I think that she will do fine after she finishes her swimming lessons...she'll go every day for the next 2 weeks. We have a pretty busy week.... along with her swimming lessons, Audrey has gymnastics on Monday evenings. Elise has BR Speech and Hearing Tues and Thurs...plus Tues is my parent conference with her teacher and Thurs is her "end of the year" party...although she will have a summer session too. Lydia has OT with Teresa tomorrow, a check-up with Dr Wood on Wed, and PT with Susan on Thursday...then we have an Early Steps meeting on Wed afternoon, and speech with Suzanne on Friday.
Martin's summer began today...which only means that a different phase of his job begins...coaches don't get much of a summer off. He starts his basketball camp this week...and his summer league basketball team and weight-lifting for the team, which lasts all summer. But, we are all thankful for the time he gets to spend with us in the mornings. I will also be working 9 days of the summer for different technology trainings for WBR...Martin will keep the girls for most of that time.
As I'm sure many of you realize, the time is drawing near for us to get news from Lydia's biopsy. The expected time frame was 8-12 weeks, and we are well over the 8-week mark. It is on my mind now more than I realize, I think, now that it is getting so close. I actually went to the Medical Neurogenetics website last week to look at some of the different mitochondrial disorders...I don't know why...maybe to prepare myself? It's not like I could make a diagnosis myself from looking at all of the characteristics of each...the neurogeneticist himself couldn't do that without taking the biopsy! I realized I was really wasting my time. When we actually get a name, then I'll do lots of research to help to understand it and to gather questions to ask the doctors. I'll try to update as soon as that information is made available to us.
Lydia is still doing great! Her tummy time is so great these days! She's been tolerating time in the pink chair from Paw-Paw...not sitting up so great in it, but not crying...that's improvement! Her feeding is super! She is starting to interact with toys more...it is so exciting to see her look at a toy and purposefully reach for it. She's been fun...and such an easy baby! She hardly makes a peep sometimes! I guess God is giving us (and her) a break....she cried so much for the first few months of her life. It is wonderful for all of us to see her happy and content for most of her day.
Thanks for your continued prayers.
Martin's summer began today...which only means that a different phase of his job begins...coaches don't get much of a summer off. He starts his basketball camp this week...and his summer league basketball team and weight-lifting for the team, which lasts all summer. But, we are all thankful for the time he gets to spend with us in the mornings. I will also be working 9 days of the summer for different technology trainings for WBR...Martin will keep the girls for most of that time.
As I'm sure many of you realize, the time is drawing near for us to get news from Lydia's biopsy. The expected time frame was 8-12 weeks, and we are well over the 8-week mark. It is on my mind now more than I realize, I think, now that it is getting so close. I actually went to the Medical Neurogenetics website last week to look at some of the different mitochondrial disorders...I don't know why...maybe to prepare myself? It's not like I could make a diagnosis myself from looking at all of the characteristics of each...the neurogeneticist himself couldn't do that without taking the biopsy! I realized I was really wasting my time. When we actually get a name, then I'll do lots of research to help to understand it and to gather questions to ask the doctors. I'll try to update as soon as that information is made available to us.
Lydia is still doing great! Her tummy time is so great these days! She's been tolerating time in the pink chair from Paw-Paw...not sitting up so great in it, but not crying...that's improvement! Her feeding is super! She is starting to interact with toys more...it is so exciting to see her look at a toy and purposefully reach for it. She's been fun...and such an easy baby! She hardly makes a peep sometimes! I guess God is giving us (and her) a break....she cried so much for the first few months of her life. It is wonderful for all of us to see her happy and content for most of her day.
Thanks for your continued prayers.
Thursday, May 22, 2008
PT this morning
PT with Susan this morning went great! Susan liked how relaxed Lydia's back was today....not so curved and tense as it has been lately. She was doing some really good supported sitting...so that is our homework...we finally get to really use the cute chair that Paw-Paw made for her. Susan thought Lydia wasn't ready for it for a while...now she's ready! Can't wait to see how she does! We're going to also continue working on tummy time and some other things...lateral weight shifting- sort of like assisted rolling, without the actual roll- giving her some practice shifting her weight from one side of the body to the other. Audrey was with us today...she had a great time playing with the toys during Lydia's therapy. Elise had school at BR Speech and Hearing.
Splash Day at Audrey's school went great yesterday! Audrey had a ball...slip&slides, inflatable slide, baby pools, sprinklers...the works! Elise could have done without the "splash," but she had fun with the bubble wands...and of course, the snacks! It was fun! The video of pictures came out good, and all of the parents loved it. Audrey's teacher surprised me with a big thank you...dinner and a movie gift cards with lots of popcorn and movie candy decorated so cute in a popcorn tub. So much for "volunteering" my time....but, it was very sweet of her.
I got Elise's 1508 eval report from EBR in the mail yesterday. She qualified for speech services (which we already knew) ...I think her expressive speech fell at the 13 month range...but, that doesn't necessarily accurately represent her communication since they were only with her for about 30 minutes and the tests are not necessarily always purely accurate. A surprise to me was that the communication board eval showed that they did not recommend a communication board for Elise. They stated that therapy and modifications already in place should continue, and they also listed some suggestions for encouraging speech at home. I wondered if my resistance to the use of the communication board was the reason that they chose not to recommend it for her or not...who knows? I don't think she really needs it anyway. We are communicating with her just fine, and it gets better and better every day.
Splash Day at Audrey's school went great yesterday! Audrey had a ball...slip&slides, inflatable slide, baby pools, sprinklers...the works! Elise could have done without the "splash," but she had fun with the bubble wands...and of course, the snacks! It was fun! The video of pictures came out good, and all of the parents loved it. Audrey's teacher surprised me with a big thank you...dinner and a movie gift cards with lots of popcorn and movie candy decorated so cute in a popcorn tub. So much for "volunteering" my time....but, it was very sweet of her.
I got Elise's 1508 eval report from EBR in the mail yesterday. She qualified for speech services (which we already knew) ...I think her expressive speech fell at the 13 month range...but, that doesn't necessarily accurately represent her communication since they were only with her for about 30 minutes and the tests are not necessarily always purely accurate. A surprise to me was that the communication board eval showed that they did not recommend a communication board for Elise. They stated that therapy and modifications already in place should continue, and they also listed some suggestions for encouraging speech at home. I wondered if my resistance to the use of the communication board was the reason that they chose not to recommend it for her or not...who knows? I don't think she really needs it anyway. We are communicating with her just fine, and it gets better and better every day.
Tuesday, May 20, 2008
Check her out!!
This was after Lydia's massage the other night. I always try to do some therapy with her after her massage...when she's loosened up a little. This was the first time I was ever able to take my hands off of her while holding herself up on her belly! It was so exciting! Martin and I were both snapping pictures of her and cheering her on! She even made it look easy...she kept herself up for a long time. She, of course, needed breaks every few seconds...but, then when I'd put her back up, she would do it again. She was even trying to pick her bottom up in the air and move her legs to crawl. I could hardly contain myself! I told Martin that I wished Susan was there because I didn't really know where to put my hands to help her, but I wanted her to get some positive feedback from what she was trying to do. Yippee for Lydia! She even tolerated tummy time on a boppy-like pillow for a long time yesterday...she usually cries after just a couple of minutes. I think it is getting easier for her. I am so proud of her! Here she is on the pillow yesterday:
Lydia did not sleep well at all last night...it was just like a couple of weeks ago when her congestion was so bad....I finally figured out the problem this morning. I think she is cutting 4 new teeth....yes, 4! And, she just got her first two last week...which I figured out was the real cause for her not sleeping well then. I'll be a little more proactive tonight with soothing measures so that she can rest (and the rest of us can too:). She also has a little teething rash on her face. I was a little nervous at first that it might be a virus, but I think it is just from teething. She doesn't have any other symptoms.
My little Elise is talking up a storm lately!! She is using more two and three word phrases...I think she feels more confident that we can understand what she is saying. We are still working on getting her to imitate the correct beginning sounds of words, but she is becoming a little resistent to that...it's not fun anymore. Suzanne and I talked about it last week, and we decided that I can demand it from her when she wants something (more, milk, ...) .I can demand that she look at me and imitate the sounds that I already know that she can say. Otherwise, I'll just keep it light...I won't demand that she always look at me and pronounce the words correctly. I think she feels like it breaks up the continuity of our conversation...and sometimes she doesn't want to do it because it is just too hard. We all know how that feels...when something is hard for us, sometimes we feel like putting forth the effort...sometimes not.
Audrey and Elise are really becoming quite a pair lately....typical sisters, sometimes fighting, sometimes playing together. It is interesting to watch. They love to sing and dance together. This weekend, I woke up to them singing, "Hit the road, Jack." It was so cute....Elise would chime in on the last word of every line...right on cue...she would anticipate it ahead of time. They both have some pretty cute dance moves too...I'll have to take a video of it soon. :)
I've been hard at work lately on creating a video presentation of the pictures that Audrey's teacher took of her class this year....all 798 of them! I did have to weed some out...it was quite a task...but fun, especially to see the finished product...a 20-minute video. We will go to Audrey's school tomorrow for her last day- Splash Day - and show it to the class...we'll also give copies to each of the students. Elise gets to come with us and splash around too! I think it will be fun! Lydia will stay home with Ms Pat. I have been very encouraged lately by her eating...still eating very well...and feeding for more people than just me! Yeah!! Her weight is 14 lbs. 9 1/2 oz....not much gain lately, but she still looks good...plenty fatty tissue... so I'm not going to worry about it.
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