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.
Subscribe to:
Posts (Atom)
