Sunday, April 20, 2008
The Latest News
Fweh!! Sorry it's been so long since I've updated...I've been spending every spare computer minute catching up on work...We are doing very well. Lydia is feeling a TON better!! Yeah!! The antihistamine is really helping with her congestion, and her ear infection must be feeling better too. She has been really happy and content lately....except for at church. We have made a new commitment to go to church as a family every week...it's been tough to take the whole family since Lydia's been born. Everyone seems really happy with our new routine...except Lydia. For the last two weeks, she has spent her only real crying fits...at church. Hopefully, she'll get used to it soon. Today we went to the Blessing of the Sick to have her blessed. Every little bit helps...I think she is on every prayer line from here to 'who knows'...and we are so thankful. Some special friends have even submitted her name to masses of healing and other special prayer lines around the world. She received a rosary this week from Italy...thank you Tammy and Sandy. Our special little angel gets lots of attention...good for her!
The Wait...
Sooo many people have been asking lately about news from Atlanta...none yet. The biopsy was done March 19th, and we were told that it would be about 8-12 weeks...you can do the math; I am trying my best not to. I don't like to clutter my brain with anxiety. With God's help, I've done a pretty good job of keeping it out of my mind. Your help with that would be good too...just trust that I will update as soon as we get that information to share. The more you help me not to think about it, the better. I prefer to just enjoy my sweet little smiley girl! We have been so proud of her lately! Martin and I noticed within the last week that she is paying more attention to toys and actually reaching her hands out to touch them. I told Martin that it brings so much joy to my heart to see her do that. He laughed and said, "It makes me feel glad....that's the difference between a male and female response about that." Though we both express our feelings differently, I think we both have the same pride. It is amazing how much pride I feel for each new thing that she accomplishes...for some reason when children are delayed with the things that they accomplish...it makes it that much sweeter when they do it. When I realized that she was actually reaching her hands up high to touch a toy the other night...I stopped in my tracks and just watched...I felt my eyes water up and flip-flops in heart! What joy!
PT last week wasn't quite as successful. She slept through the whole session. Susan just did some passive stretching with her, since she couldn't get her awake long enough to participate in any active movements. I think she was still not feeling well then. We actually skipped OT last week because of her sickness...that was probably for the best.
Lydia "Cultured"
I just found the prayer name card that someone gave to Lydia for her baptism...this is what it reads:
And the Lord, He it is that doth go before thee; He will be with thee, He will not fail thee, neither forsake thee, fear not, neither be dismayed.
Deuteronomy 31:8
How fitting....and faith-growing, not a coincidence that it fits Lydia perfectly. He will be with her...He will not fail her or forsake her....do not fear or be discouraged. How could we be afraid or discouraged when we know that God's healing and loving hand are upon her always..?
Sensitivity to words....
It's funny how your outlook on certain things changes as life brings new circumstances. I've never thought much about the connotation of certain terms used with children with special needs...until now. For some reason, the word "wrong" as in "What's wrong with her?" suddenly rubs me the "wrong" way...no pun intended. :) How could anything be wrong with Lydia or anyone else created special by God? As I've said before and we all know, God doesn't make mistakes...so there is absolutely nothing "wrong" with her...in fact all of the things that are "right" with her are so fully appreciated and celebrated. Also...."normal" is one that has a hidden meaning...of course she's normal. She is just exactly who she was intended to be...whatever circumstances that brings to her....for some reason, "typical" seems to rest better with me. Lydia does not develop the same as typical children her age, but that doesn't mean that she is not normal. "Issues" for some reason seems to also be a better word than "problems" though I sometimes catch myself using some of these words too. I know it's kind of crazy, and I never dreamed that something so trivial would bother me at all...but, I guess you never know.
Our big girls are doing well too! Healthy and happy! Audrey and I had an emotional moment last week. She had a field trip, and she cried because I was not going with her...of course after she left, I cried too. I always thought that when I decided to be a stay-at-home mom, I would be able to attend everything like that. I imagined myself as one of those moms who volunteers for everything and is always there...not the case. When I called Martin in tears, he pointed out the obvious...he said, "I know you realize that we have 3 kids, right? You're not going to be able to be everywhere at once." This is true...and she and I did both get over it. She had another field trip the following day, and she did not cry at all that I wasn't going to that one.
Elise is doing well too....she's been on her usual tear...we have laughed and nicknamed her El Nino because she is good at creating havoc in our house. She's gotten some sympathy from friends lately for that...but it's all in fun. Sometimes we walk into a room and we can tell that "El Nino" has passed through. Elise's speech has been a little stagnant lately. She is stuck in some of the same routines as far as repeating things over and over. I also see that when I don't understand something that she is trying to tell me, she reverts to a word that she knows I understand...and basically changes what she is trying to say. Suzanne saw some improvements last week...trying to put together two syllable words...and adding -ing to verbs. I'll be looking out for those different accomplishments. I also have been planning to put together a "guide to understanding Elise's speech" for relatives and friends who are with her often. I'll try to get to that soon...there are definite rules for the way that she pronounces words, and it helps to know what those rules are. Suzanne was not in favor of the communication board that we discussed at the EBR meeting...she thinks it might detract Elise from her progress right now. We'll continue to be open to it, but we value Suzanne's opinion...she has done such a phenomenal job with Elise...I'll try to invite her to be here for the eval for the communication board so that she can help us to decide if it will be worthwhile. This week is Elise's last week of therapy at LSU until fall. She'll continue with Suzanne and BR Speech and Hearing for the summer.
The Wait...
Sooo many people have been asking lately about news from Atlanta...none yet. The biopsy was done March 19th, and we were told that it would be about 8-12 weeks...you can do the math; I am trying my best not to. I don't like to clutter my brain with anxiety. With God's help, I've done a pretty good job of keeping it out of my mind. Your help with that would be good too...just trust that I will update as soon as we get that information to share. The more you help me not to think about it, the better. I prefer to just enjoy my sweet little smiley girl! We have been so proud of her lately! Martin and I noticed within the last week that she is paying more attention to toys and actually reaching her hands out to touch them. I told Martin that it brings so much joy to my heart to see her do that. He laughed and said, "It makes me feel glad....that's the difference between a male and female response about that." Though we both express our feelings differently, I think we both have the same pride. It is amazing how much pride I feel for each new thing that she accomplishes...for some reason when children are delayed with the things that they accomplish...it makes it that much sweeter when they do it. When I realized that she was actually reaching her hands up high to touch a toy the other night...I stopped in my tracks and just watched...I felt my eyes water up and flip-flops in heart! What joy!
PT last week wasn't quite as successful. She slept through the whole session. Susan just did some passive stretching with her, since she couldn't get her awake long enough to participate in any active movements. I think she was still not feeling well then. We actually skipped OT last week because of her sickness...that was probably for the best.
Lydia "Cultured"
I just found the prayer name card that someone gave to Lydia for her baptism...this is what it reads:
And the Lord, He it is that doth go before thee; He will be with thee, He will not fail thee, neither forsake thee, fear not, neither be dismayed.
Deuteronomy 31:8
How fitting....and faith-growing, not a coincidence that it fits Lydia perfectly. He will be with her...He will not fail her or forsake her....do not fear or be discouraged. How could we be afraid or discouraged when we know that God's healing and loving hand are upon her always..?
Sensitivity to words....
It's funny how your outlook on certain things changes as life brings new circumstances. I've never thought much about the connotation of certain terms used with children with special needs...until now. For some reason, the word "wrong" as in "What's wrong with her?" suddenly rubs me the "wrong" way...no pun intended. :) How could anything be wrong with Lydia or anyone else created special by God? As I've said before and we all know, God doesn't make mistakes...so there is absolutely nothing "wrong" with her...in fact all of the things that are "right" with her are so fully appreciated and celebrated. Also...."normal" is one that has a hidden meaning...of course she's normal. She is just exactly who she was intended to be...whatever circumstances that brings to her....for some reason, "typical" seems to rest better with me. Lydia does not develop the same as typical children her age, but that doesn't mean that she is not normal. "Issues" for some reason seems to also be a better word than "problems" though I sometimes catch myself using some of these words too. I know it's kind of crazy, and I never dreamed that something so trivial would bother me at all...but, I guess you never know.
Our big girls are doing well too! Healthy and happy! Audrey and I had an emotional moment last week. She had a field trip, and she cried because I was not going with her...of course after she left, I cried too. I always thought that when I decided to be a stay-at-home mom, I would be able to attend everything like that. I imagined myself as one of those moms who volunteers for everything and is always there...not the case. When I called Martin in tears, he pointed out the obvious...he said, "I know you realize that we have 3 kids, right? You're not going to be able to be everywhere at once." This is true...and she and I did both get over it. She had another field trip the following day, and she did not cry at all that I wasn't going to that one.
Elise is doing well too....she's been on her usual tear...we have laughed and nicknamed her El Nino because she is good at creating havoc in our house. She's gotten some sympathy from friends lately for that...but it's all in fun. Sometimes we walk into a room and we can tell that "El Nino" has passed through. Elise's speech has been a little stagnant lately. She is stuck in some of the same routines as far as repeating things over and over. I also see that when I don't understand something that she is trying to tell me, she reverts to a word that she knows I understand...and basically changes what she is trying to say. Suzanne saw some improvements last week...trying to put together two syllable words...and adding -ing to verbs. I'll be looking out for those different accomplishments. I also have been planning to put together a "guide to understanding Elise's speech" for relatives and friends who are with her often. I'll try to get to that soon...there are definite rules for the way that she pronounces words, and it helps to know what those rules are. Suzanne was not in favor of the communication board that we discussed at the EBR meeting...she thinks it might detract Elise from her progress right now. We'll continue to be open to it, but we value Suzanne's opinion...she has done such a phenomenal job with Elise...I'll try to invite her to be here for the eval for the communication board so that she can help us to decide if it will be worthwhile. This week is Elise's last week of therapy at LSU until fall. She'll continue with Suzanne and BR Speech and Hearing for the summer.
Tuesday, April 15, 2008
The Same...
Lydia is still feeling pretty awful... :( Congestion is still terrible...still not eating very well...lost a few ounces. I did see a few smiles today though, so that's a good sign. I hope to see her feel better soon. :)
Monday, April 14, 2008
Dr Appt today
What an afternoon! The crew and I got all buckled up in the truck to take Lydia to her 3:15 appt with Dr Wood...to find that the truck wouldn't start! Thank God for Aunt Becky who saved us! There's not too many people that you can call who'd say, "I'll stop what I'm doing. I'm on my way." I hope that I can be that person for someone one day. Aunt Becky stayed with my big girls and let me take her brand new car to bring Lydia to the dr. I'm so glad that we went...Lydia has an ear infection. We start an antibiotic tonight, and he also prescribed an antihistimine since I told him that I find that she gets this congestion too often...and that it's so bad every time. Hopefully all of this will help her to feel better soon.
Elise's Eval
Elise's 1508 eval for the EBR school system went very well today. Tiffanie wasn't able to keep Audrey and Lydia because Mason had fever (we hope he's feeling better!), but it all worked out. Audrey was a big help with Elise, and all three girls were a big hit! While I sat with Lydia and answered some questions from a few of the therapists and evaluators, some of the other therapists took Audrey and Elise to do some testing with Elise. They felt like Elise was much more uninhibited with Audrey there...she didn't clam up at all, so they got a pretty accurate feel for her skills. All of the evaluators were very complimentary of the girls...one even said how much fun she had with them...she said, "Bring them back again...come every other day...I might come to your house just to play with them." It was fun.
Elise will probably qualify for speech services within the school system.
[Just to clarify for everyone: Elise now receives speech therapy once a week in our home with an Early Steps speech therapist (Suzanne). The Early Steps program is only for kids 0-3 years, so Elise will age out of the program in August. After they age out of Early Steps, they move on to therapy provided by the school system. We will have an IEP to discuss how those needs will be met...in a school or at home, etc.]
Elise will probably not qualify for OT with the school system. Requirements are that a child must score 6 mos. below their cognitive skills (not chronological age) to qualify for OT services within the school system...the reason is a lack of therapists...they make the requirements more stringent so that they serve only the more severe cases. Elise scored at 31 months for self-care and 27 mos. for fine motor. She is about 32 mos. now, so she is not too far behind. We will continue to pursue evaluation for OT services through Early steps for the summer...then we'll decide in the fall if we want to get private OT services or not (probably with Laura from Neurotherapy....she has worked with her for the past year) . The therapist today also gave me some ideas for activities to help Elise with hand strength and coordination...that is helpful...we'll try to incorporate some activities at home.
The speech therapist also referred Elise for a communication board...a board with pictures for her to push a button to enunciate words for her. This is something that has been suggested to us by all of her therapists, and Martin and I have always declined...feeling like it was limiting...spoken words and signs seemed much better to us. But, I do admit that I've never even seen a board...to make a true judgement about if it would be good for Elise or not. And the the therapist today gave me a new take on it...some different ways of using it instead of using it as a primary form of communication: building vocabulary, strengthening articulation, etc. She said that a team from pupil appraisal would come to our house to evaluate Elise with the boards to see which one might be of the most benefit to her....then we have the option to decline if we so wish. The therapist just felt like Elise's articulation gets in the way...maybe not as much for us (our family) because we can pretty much figure out what she's saying (most of the time)...but, the rest of the world (especially in a school setting) would have a harder time, which would limit what Elise could do. She felt like Elise really could answer some of the questions that she asked of her today, but she did not understand her speech enough to be sure. Since we're not losing anything to do this eval for the communication board and we're not tied to it...I thought we could give it a try.
Lydia's sickness:
She feels absolutely awful again today....a little fever: 100 degrees, nose congestion starting to turn yellow-green...we have an appt with Dr Wood for 3:15. Hopefully we can get some kind of medicine to help her to feel better. Her appetite is really dwindling now...I can barely get her to take 1 oz at a time...she's just miserable. Please pray that she feels better soon. :)
Elise will probably qualify for speech services within the school system.
[Just to clarify for everyone: Elise now receives speech therapy once a week in our home with an Early Steps speech therapist (Suzanne). The Early Steps program is only for kids 0-3 years, so Elise will age out of the program in August. After they age out of Early Steps, they move on to therapy provided by the school system. We will have an IEP to discuss how those needs will be met...in a school or at home, etc.]
Elise will probably not qualify for OT with the school system. Requirements are that a child must score 6 mos. below their cognitive skills (not chronological age) to qualify for OT services within the school system...the reason is a lack of therapists...they make the requirements more stringent so that they serve only the more severe cases. Elise scored at 31 months for self-care and 27 mos. for fine motor. She is about 32 mos. now, so she is not too far behind. We will continue to pursue evaluation for OT services through Early steps for the summer...then we'll decide in the fall if we want to get private OT services or not (probably with Laura from Neurotherapy....she has worked with her for the past year) . The therapist today also gave me some ideas for activities to help Elise with hand strength and coordination...that is helpful...we'll try to incorporate some activities at home.
The speech therapist also referred Elise for a communication board...a board with pictures for her to push a button to enunciate words for her. This is something that has been suggested to us by all of her therapists, and Martin and I have always declined...feeling like it was limiting...spoken words and signs seemed much better to us. But, I do admit that I've never even seen a board...to make a true judgement about if it would be good for Elise or not. And the the therapist today gave me a new take on it...some different ways of using it instead of using it as a primary form of communication: building vocabulary, strengthening articulation, etc. She said that a team from pupil appraisal would come to our house to evaluate Elise with the boards to see which one might be of the most benefit to her....then we have the option to decline if we so wish. The therapist just felt like Elise's articulation gets in the way...maybe not as much for us (our family) because we can pretty much figure out what she's saying (most of the time)...but, the rest of the world (especially in a school setting) would have a harder time, which would limit what Elise could do. She felt like Elise really could answer some of the questions that she asked of her today, but she did not understand her speech enough to be sure. Since we're not losing anything to do this eval for the communication board and we're not tied to it...I thought we could give it a try.
Lydia's sickness:
She feels absolutely awful again today....a little fever: 100 degrees, nose congestion starting to turn yellow-green...we have an appt with Dr Wood for 3:15. Hopefully we can get some kind of medicine to help her to feel better. Her appetite is really dwindling now...I can barely get her to take 1 oz at a time...she's just miserable. Please pray that she feels better soon. :)
Sunday, April 13, 2008
Yucky congestion
Lydia is still feeling pretty awful. I think I will try to bring her in to see Dr Wood tomorrow afternoon. (We have Elise's 1508 eval in the morning.) I also want him to take another look at her incision anyway. Her stitches were dissolvable, but there is one stitch that is still there. I called about it a couple of weeks ago...he said to just keep neosporin on it, and it might just take longer to dissolve...I think we've given it enough time. Dr Alberty's nurse looked at it for me on Friday and said that they'll probably have to remove it with a suture removal kit.
Another note from our appt with Alberty that I forgot...
I told him that I was confused about how Lydia had eaten so well for a whole week and had only gained 1 1/2 oz. Again, he said that we would not be slaves to the numbers..he is no longer holding us to that 1/2 oz per day figure. He just wants to keep up with her to be sure that she is gaining enough for Lydia...not compared to anyone else. Right now, she's good. Anyhow, he said that the reason that she may seem to not gain as much could be due to possible spasticity in her muscles...if she is constantly tightening some of her muscles, she is burning more calories than a typical kid. For example, her big toes are constantly turned up...it takes energy for her to keep them in this position, which means that it takes calories. He was not diagnosing this persay... he was just offering it as a possibility. It makes sense to me.
Another note from our appt with Alberty that I forgot...
I told him that I was confused about how Lydia had eaten so well for a whole week and had only gained 1 1/2 oz. Again, he said that we would not be slaves to the numbers..he is no longer holding us to that 1/2 oz per day figure. He just wants to keep up with her to be sure that she is gaining enough for Lydia...not compared to anyone else. Right now, she's good. Anyhow, he said that the reason that she may seem to not gain as much could be due to possible spasticity in her muscles...if she is constantly tightening some of her muscles, she is burning more calories than a typical kid. For example, her big toes are constantly turned up...it takes energy for her to keep them in this position, which means that it takes calories. He was not diagnosing this persay... he was just offering it as a possibility. It makes sense to me.
Friday, April 11, 2008
Appt with Alberty
Sorry I've been posting sparingly lately...just busy with work and everything else. We're good! Except, Lydia woke up this morning with her yucky congestion again!! Poor baby! I have a feeling that is the cause of her decline in appetite...she has been taking about 2 oz at each feeding today. But, the good news is that Dr Alberty is not worried and not interested in looking into a feeding tube for Lydia at this time. He was pleased with her height for weight on the chart, and he also said that we are not slaves to the chart in Lydia's case. The charts are created for typical healthy children, so the numbers don't necessary apply to our very special Lydia. He said that the charts are there to alarm doctors that something is wrong if they don't continue growing on the bell curve...in Lydia's case, we already know something is "not right." So, we will compare her to herself and not to the rest of the healthy population. He was happy with the amount of subcutaneous tissue that she has. That means that her brain is definitely not being malnourished...when we eat, there is a definite order of organs that receive the calories...stomach, liver, brain, etc. and then the muscles and tissues...so, if her tissue looks good, we can assume that her brain is getting the nutrition that it needs. Also, since we already know that her brain growth is below normal, this may have something to do with her overall weight, since your head's weight is a certain percentage of your weight. And he says that since her height for weight looks good...even though her weight is off the chart....we don't want to feed her any more than we are doing now...that would cause her to gain too much weight for her height, and that wouldn't be good for her either. We will keep close ties with him and see him at least every three months to keep tabs on her growth. He said that we are not at all saying that she will never need a G tube...nor that she definitely will at some point...we are just saying that right now, she doesn't need it. I felt so satisfied with these responses...I was hoping to not have the decision left up entirely to me, and he never even really asked if I wanted it...he was sure that she was doing well without it...that, of course, makes me happy!
PT yesterday
Sue-Sue gave Lydia an A+ at her therapy yesterday! She did GREAT! She held up her head for several seconds without tiring...enjoying looking at herself in the mirror. She also did some good work with assisted rolling. And the biggest improvement was that she tolerated the work for a long time without fussing...or shutting down. She was a sweetheart! We will continue to work at home with our homework to keep up her good work....hopefully her cold won't slow her down too much.
Another request for massage....I stayed up watching Randy Pausch with Dianne Sawyer the other night (if you want to be inspired, you have got to watch his "last lecture"...find it online...he has also written a book...he is dying of pancreatic cancer and is sharing his wisdom about life with the world...he is amazing!) Anyway, it was so late that I was going to skip Lydia's massage...she said, "I don't think so mama." As soon as I got all of her clothes off to change her into pajamas, she started cooing at me with those sparkling little eyes...I knew just what she was thinking. I asked, "Do you want a massage?" She let out the loudest, cutest little cackle that she, of course, got her way! She was not going to let me skip her favorite part of the day....and one of my favorites too!
PT yesterday
Sue-Sue gave Lydia an A+ at her therapy yesterday! She did GREAT! She held up her head for several seconds without tiring...enjoying looking at herself in the mirror. She also did some good work with assisted rolling. And the biggest improvement was that she tolerated the work for a long time without fussing...or shutting down. She was a sweetheart! We will continue to work at home with our homework to keep up her good work....hopefully her cold won't slow her down too much.
Another request for massage....I stayed up watching Randy Pausch with Dianne Sawyer the other night (if you want to be inspired, you have got to watch his "last lecture"...find it online...he has also written a book...he is dying of pancreatic cancer and is sharing his wisdom about life with the world...he is amazing!) Anyway, it was so late that I was going to skip Lydia's massage...she said, "I don't think so mama." As soon as I got all of her clothes off to change her into pajamas, she started cooing at me with those sparkling little eyes...I knew just what she was thinking. I asked, "Do you want a massage?" She let out the loudest, cutest little cackle that she, of course, got her way! She was not going to let me skip her favorite part of the day....and one of my favorites too!
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