Therapy is going amazingly. We hear from Maddy's therapists each week she has made more progress. When I picked her up from daycare today the teachers had a funny story to share. Maddy has a little buddy who has also just started to crawl. When one of them sees the other with a toy, they will often crawl over to get it. Maddy apparently does not like her toys being taken away and decided to push the other little boy over and crawl on top of him like she was pinning him in a wrestling match (he was not hurt by the way). While I felt bad that my kid was "the bully", I was so happy she was physically able to do this and my heart melted that she is interested in playing with another baby. At one time, there was a question of Autism due to her lack of eye contact and the difficulty we had engaging her, and now my little girl will often climb up me just to watch my face and gives hugs.
OT is helping us work on oral motor skills as well as her posture, and releasing objects when asked. PT is having us work on pulling up to standing, cruising and her core strength. We are working with Early On to do some work on her sensory issues. They recommended doing things like joint compression and "messy play" to desensitize her to the feeling on her hands. We will also be using uncooked rice to get her used to the feeling and texture on her hands. They have also given us some exercises to check how her depth perception is.
But.... there has been some question of her vision lately, and whether or not the bifocals are the right decision for her. We were encouraged to get a second opinion from a more experienced doctor, and while this seems simple enough, it is opening a whole new can of worms. The more experienced doctor in the area (there are only really two or three pediatric specialists within 3 hours from us) works out of the same office as our current doctor and is so busy that they booking appointments for September now. While this other doctor is more experienced, our current doctor was trained more recently which could mean more updated information and techniques. She preformed both of Maddy's first two surgeries and has been a great support to us over the past year. What if we get a different answer than the ones previously given to us? Who do we trust and listen to and how do we know what the right thing to do? Both are excellent doctors. While I know both doctors are professionals and will be open to us having a second opinion, part of me is nervous to pursue this for fear of learning things with her vision are worse than we thought, or that her current treatment has not been the right thing for her. But, thanks to the encouragement of my wonderful husband, I made the phone call today to our current doctor. Her medical assistant wrote all of my concerns down and said that she would have the doctor call us tomorrow to discuss it but that if we would like, they would refer for us for a second opinion as well.
I have done a lot of reading to prepare for the phone call already and have all my concerns written down to address with her tomorrow. Now I just have to sit by the phone and wait.
Tuesday, May 15, 2012
Friday, April 27, 2012
Bragging Rights
I want to start by saying, I have wonderful, supportive friends, who have wonderful kids that I love dearly. I am always sincerely excited for every new milestone they reach. I know you are not supposed to compare your child to anyone else's, but each new milestone the other kids made was always a bitter sweet reminder of the milestones that seemed so far away for us, and sometimes felt impossible to reach. So today, I am happy to have plenty to brag about! I couldn't be more proud of my little girl, and I honestly can't remember the last time I cried so many tears of joy.
Maddy has been in therapy only 3 weeks now, but has come so far. Each of her therapists this week commented on how much improvement she is making week to week, and she has already reached many of the initial goals we made 3 weeks ago.
In the last 3 weeks, Maddy has learned to transition from laying down to sitting in the proper position, and can get onto all fours as well. She has learned to say "Dada", and now says it all the time. When we started she had a hard time supporting herself with one arm while using the other to play, but can now do this for long periods of time without help. She can pick up cheerios and puffs and little pieces of food with a pincer grasp and get foods into her mouth. And speaking of foods, in the last few days she is tolerating more and more textured foods, she will even eat stage 3 foods now! She can pull herself up to standing now, the proper way, and stand supporting herself with only one hand. She is improving on using both hands together in play, and her hands are not clenched into fists nearly as often. And for the topper on the cake, she has started crawling a little at a time, and can scoot towards things she wants a little now too. Just as recently as last week she had no interest in crawling, and now sees something she wants and tries without any help or encouragement!
All the improvement I have seen in her is really inspiring to me. The fact that insurance companies do not cover PT or OT for babies like Maddy is very frustrating to me. If I ever have the energy or free time, I would love to do something, somehow, to make a difference.
Maddy has been in therapy only 3 weeks now, but has come so far. Each of her therapists this week commented on how much improvement she is making week to week, and she has already reached many of the initial goals we made 3 weeks ago.
In the last 3 weeks, Maddy has learned to transition from laying down to sitting in the proper position, and can get onto all fours as well. She has learned to say "Dada", and now says it all the time. When we started she had a hard time supporting herself with one arm while using the other to play, but can now do this for long periods of time without help. She can pick up cheerios and puffs and little pieces of food with a pincer grasp and get foods into her mouth. And speaking of foods, in the last few days she is tolerating more and more textured foods, she will even eat stage 3 foods now! She can pull herself up to standing now, the proper way, and stand supporting herself with only one hand. She is improving on using both hands together in play, and her hands are not clenched into fists nearly as often. And for the topper on the cake, she has started crawling a little at a time, and can scoot towards things she wants a little now too. Just as recently as last week she had no interest in crawling, and now sees something she wants and tries without any help or encouragement!
All the improvement I have seen in her is really inspiring to me. The fact that insurance companies do not cover PT or OT for babies like Maddy is very frustrating to me. If I ever have the energy or free time, I would love to do something, somehow, to make a difference.
Sunday, April 22, 2012
A week long rollercoaster ride
This week was the second week for me at my new job, it was also the week I found out that my new insurance (who is also Dallas's company's insurance provider) does not cover therapy for developmental delays or sensory integration therapy, both of which Maddy needs. The week started out with lots of stress, tears and guilt for taking this new job that I thought would be better for Madelyn. We make too much money for any financial assistance, but cannot afford to pay without insurance. Early On, which is free therapy provided by the school district, is a great help, but it is not nearly enough for Madelyn at this point. Luckily, after getting the advice of my parents, and parents on my facebook group for ONH and from my wonderful friend Janna who has a great wealth of knowledge in this area, we have come a solution. While it may not be cheap, it will provide everything Madelyn needs, and that is all that matters.
The week continued on, and Maddy had 3 days of therapy (3 days of PT and 1 of OT). We are still waiting on insurance to approve her feeding therapy, but it is expected to get approved and for Maddy to start in the next week or so.
I can already see a difference in her. This morning I went in to find her in her crib after her nap sitting up (in the proper position with proper posture!) all on her own, for the first time! I can't tell you how happy that makes me. In only two weeks of therapy she has learned to get from laying down to sitting up properly on her own. She is also now feeding her self puffs and pieces of banana using her finger and thumb. She is very close to being able to pull herself up to standing on her own, and is close to trying to crawl as well.
The PT also realized this week that Maddy is hyperextending (or locking) her knees when she is standing and not properly using her muscles. They have recommended braces for her ankles and feet (ankle / foot orthosis) to force her knees from locking so that it forces her to use her muscles instead of relying on locking her knees.
The OT is in the process of getting together information on brushing therapy for Maddy's sensory issues. While we do not have a formal diagnosis, all of the therapists we have seen as well as the neurodevelopmental physician have recognized that Maddy does have some sensory issues. The brushing therapy would help with some of her sensitivies, but is very intensive and has to be done a certain way.
I have started to read a book on sensory processing disorder (SPD) called Sensational Children. We still aren't sure if Maddy has this, but I do recognize some of the things she does in the book, and I thought it might help me to understand why she does certain things and how to help her.
We finish this week on a much more positive note than we started. Maddy will continue to get her therapy! She is improving all the time, and the more questions we ask and reading we do, the better we understand how to help her. Not to mention she is one of the happiest babies I have ever met and never ceases to make me smile.
The week continued on, and Maddy had 3 days of therapy (3 days of PT and 1 of OT). We are still waiting on insurance to approve her feeding therapy, but it is expected to get approved and for Maddy to start in the next week or so.
I can already see a difference in her. This morning I went in to find her in her crib after her nap sitting up (in the proper position with proper posture!) all on her own, for the first time! I can't tell you how happy that makes me. In only two weeks of therapy she has learned to get from laying down to sitting up properly on her own. She is also now feeding her self puffs and pieces of banana using her finger and thumb. She is very close to being able to pull herself up to standing on her own, and is close to trying to crawl as well.
The PT also realized this week that Maddy is hyperextending (or locking) her knees when she is standing and not properly using her muscles. They have recommended braces for her ankles and feet (ankle / foot orthosis) to force her knees from locking so that it forces her to use her muscles instead of relying on locking her knees.
The OT is in the process of getting together information on brushing therapy for Maddy's sensory issues. While we do not have a formal diagnosis, all of the therapists we have seen as well as the neurodevelopmental physician have recognized that Maddy does have some sensory issues. The brushing therapy would help with some of her sensitivies, but is very intensive and has to be done a certain way.
I have started to read a book on sensory processing disorder (SPD) called Sensational Children. We still aren't sure if Maddy has this, but I do recognize some of the things she does in the book, and I thought it might help me to understand why she does certain things and how to help her.
We finish this week on a much more positive note than we started. Maddy will continue to get her therapy! She is improving all the time, and the more questions we ask and reading we do, the better we understand how to help her. Not to mention she is one of the happiest babies I have ever met and never ceases to make me smile.
Sunday, April 15, 2012
One week down, many more to go
After this week, I have a new understanding and appreciation for my patients. Two things I have learned over the course of this week. 1. Too much information is overwhelming, and 2. Each time they (the therapist or doctor) says, just go out and do or buy this, it may seem like a small thing to them, in reality, small things pile up quickly.
Maddy finished her first week of therapy. She had two days of PT and OT both and then a feeding evaluation with her OT. The feeding therapy eval was informative and overwhelming at the same time. We learned that they think Maddy is still refluxing, when she burbs, she is swallowing after, which may be causing her aversion to some foods and her sippy cup. We were advised to call her pediatrician to follow-up on it and observe for signs and symptoms. They also said since Maddy is developmentally at a 6-8 month level, her readiness for eating will correlate with that. They said she may not be ready for more solid foods or meats yet. They are having us do a 3 day food journal to keep track of what and how much she is eating. They would also like us to come for feeding therapy twice a week with out OT, which adds another day of therapy to our schedule (we are up to 3 days a week now, plus a home visit from the special education therapist once a week).
PT and OT are going well, although Maddy is exhausted at the end of the days she has therapy. Dallas has been the one to meet with them so far, but says he really enjoys going and finds it very helpful. It seems that as the week goes on, Dallas keeps saying to me "oh yeah, that's another thing they want us to work on", I think my brain is overloaded. In a nutshell, we are working on increasing the muscle tone in Maddy's arms and legs, working on peek and boo type toys and games (to help teach Maddy that things still exist when she can't see them), using two hands to play and engaging both hands when playing, and tracking objects with her eyes.
They also mentioned getting Maddy a pair of shorts that are spandex type material, with the legs attached to eachother. This helps keep Maddy's thighs together. They said she is having a hard time keeping them together due to low muscle tone, and this will help with that.
So, after learning a lot this week, and quickly realizing we needed a system to organize all of this, we came up with a solution. First off, Dallas asked the therapist to write down a list of the main goals they would like us to focus on. We have a large dry erase board mounted in Maddy's bedroom which we started writing all of her therapy goals on. It also helps Dallas and I communicate with each other since we rarely see eachother (except when one of us is sleeping) during the week. We also plan to use our ipad to record short videos for each other of what the new exercises look like.
The good news is, I know this is going to help her, I can see the difference when we work with her, so it makes it all worth it in the end.
Maddy finished her first week of therapy. She had two days of PT and OT both and then a feeding evaluation with her OT. The feeding therapy eval was informative and overwhelming at the same time. We learned that they think Maddy is still refluxing, when she burbs, she is swallowing after, which may be causing her aversion to some foods and her sippy cup. We were advised to call her pediatrician to follow-up on it and observe for signs and symptoms. They also said since Maddy is developmentally at a 6-8 month level, her readiness for eating will correlate with that. They said she may not be ready for more solid foods or meats yet. They are having us do a 3 day food journal to keep track of what and how much she is eating. They would also like us to come for feeding therapy twice a week with out OT, which adds another day of therapy to our schedule (we are up to 3 days a week now, plus a home visit from the special education therapist once a week).
PT and OT are going well, although Maddy is exhausted at the end of the days she has therapy. Dallas has been the one to meet with them so far, but says he really enjoys going and finds it very helpful. It seems that as the week goes on, Dallas keeps saying to me "oh yeah, that's another thing they want us to work on", I think my brain is overloaded. In a nutshell, we are working on increasing the muscle tone in Maddy's arms and legs, working on peek and boo type toys and games (to help teach Maddy that things still exist when she can't see them), using two hands to play and engaging both hands when playing, and tracking objects with her eyes.
They also mentioned getting Maddy a pair of shorts that are spandex type material, with the legs attached to eachother. This helps keep Maddy's thighs together. They said she is having a hard time keeping them together due to low muscle tone, and this will help with that.
So, after learning a lot this week, and quickly realizing we needed a system to organize all of this, we came up with a solution. First off, Dallas asked the therapist to write down a list of the main goals they would like us to focus on. We have a large dry erase board mounted in Maddy's bedroom which we started writing all of her therapy goals on. It also helps Dallas and I communicate with each other since we rarely see eachother (except when one of us is sleeping) during the week. We also plan to use our ipad to record short videos for each other of what the new exercises look like.
The good news is, I know this is going to help her, I can see the difference when we work with her, so it makes it all worth it in the end.
Tuesday, April 10, 2012
A special thanks to Dallas
It will be another rough week for me. All that effort to call Dallas to check on all Maddy's appointments is just so much work for me, when all he has to do is pick her up (after only 4-5 hours of sleep), drive her downtown, and spend hours at appointments. Yep, it is so difficult for me.... I am joking about it being difficult for me of course, but I did want to take a few minutes to say how wonderful my husband is.
Although I would love to be there for every single appointment she has, it is just not possible. I try my best to take care of as many as I can, but the reality is that Dallas working second shift leaves a lot of the responsibility up to him. He works very long nights, often 10 - 12 hours and sometimes 6 days a week. He gets up after only 4-5 hours of sleep for some of her appointments without complaint. In fact, he called me this week after her first therapy appointment and his only complaint was that he worried the timing wouldn't work for her because it got in the way of her nap and she was exhausted.
I couldn't imagine making it through all this sane without the love and support of such a wonderful partner who cares about our daughter and her needs every bit as much as I do. I am sure I often forget to tell him how much I appreciate him (so I will just embarrass him by doing it publicly instead).
I can't tell you how many times people have told me what a great dad he is after watching the two of them together, or how often people tell me how lucky I am. I found myself a keeper, that is for sure.
End Sappy Rant.
On a side note: Maddy has another therapy eval this week (for feeding therapy), and 2 additional therapy sessions, I will likely just post an update this weekend of all 3 so as not to bore you with updates every other day.
Although I would love to be there for every single appointment she has, it is just not possible. I try my best to take care of as many as I can, but the reality is that Dallas working second shift leaves a lot of the responsibility up to him. He works very long nights, often 10 - 12 hours and sometimes 6 days a week. He gets up after only 4-5 hours of sleep for some of her appointments without complaint. In fact, he called me this week after her first therapy appointment and his only complaint was that he worried the timing wouldn't work for her because it got in the way of her nap and she was exhausted.
I couldn't imagine making it through all this sane without the love and support of such a wonderful partner who cares about our daughter and her needs every bit as much as I do. I am sure I often forget to tell him how much I appreciate him (so I will just embarrass him by doing it publicly instead).
I can't tell you how many times people have told me what a great dad he is after watching the two of them together, or how often people tell me how lucky I am. I found myself a keeper, that is for sure.
End Sappy Rant.
On a side note: Maddy has another therapy eval this week (for feeding therapy), and 2 additional therapy sessions, I will likely just post an update this weekend of all 3 so as not to bore you with updates every other day.
Wednesday, April 4, 2012
No News is Good News!
I am going to be honest, there are times I question whether or not I am doing the right things for my daughter, but what mom doesn't? It can be difficult to be questioned by well meaning people every day about whether or not your child is crawling or walking or talking yet, or what they are eating. I know they are just curious and do not mean anything by it, but it only makes you question yourself more when you have to continuously answer "no, she isn't doing that yet" to every question they ask.
Enter our Pediatrician, who almost brought me to tears today (in a good way). As we were discussing Madelyn's progress at her 12 month well check she emphasized that the more time that goes on, the more they (her physicians) believe Madelyn's delays are not related to her Optic Nerve Hypoplasia. My first thought was to be devastated that we had no answers, as I was sure the two things had to be related. The Pediatrician explained that it was a good sign that none of the team of specialists can pin point a diagnosis. She said low muscle tone and global developmental delays have a better prognosis if not associated with any particular syndrome. Often when delays are related to a specific syndrome, the child will only develop to a certain point, and then stop making progress. She is very encouraged by the progress Maddy is making and is happy that we will be taking the therapy up a notch. She believes it will be a lot of work the first few years of Maddy's life, but she thinks if she keeps making progress like she has been, the outcome will be positive. So in this case, no news is good news, and for the first time, I was happy to not have any answers.
We also had Madelyn's ear checked again, but she still has fluid in them related to her recent ear infection. They plan to re-check her hearing in 3 months to determine whether or not she may need a referral to an ENT, but the pediatrician did not seem very concerned.
We also saw Maddy's Pedatric Ophthalmologist this week. She agrees with our pediatrician that the delays are not related to her vision or her ONH and thought it might be a good idea to refer us to a geneticist. It can take as long as 6 months to a year to get in once referred so she wanted to get the ball rolling for us in case we decide it is something we want done in the near future. No sign of glaucoma and no change in her prescription (yay for not having to spend money on yet another contact or pair of glasses!) She did notice Maddy's eye is wandering out more than usual, which may mean we need to increase her eye patching time if it does not improve. But all in all, things went well.
And finally, when we got home today, I had a letter waiting in the mail saying our insurance has finally approved Maddy's therapy and we can schedule her PT, OT and feeding therapy tomorrow! I am a little nervous about fitting it all in to our already crazy schedule, but we are so excited to get started!
Enter our Pediatrician, who almost brought me to tears today (in a good way). As we were discussing Madelyn's progress at her 12 month well check she emphasized that the more time that goes on, the more they (her physicians) believe Madelyn's delays are not related to her Optic Nerve Hypoplasia. My first thought was to be devastated that we had no answers, as I was sure the two things had to be related. The Pediatrician explained that it was a good sign that none of the team of specialists can pin point a diagnosis. She said low muscle tone and global developmental delays have a better prognosis if not associated with any particular syndrome. Often when delays are related to a specific syndrome, the child will only develop to a certain point, and then stop making progress. She is very encouraged by the progress Maddy is making and is happy that we will be taking the therapy up a notch. She believes it will be a lot of work the first few years of Maddy's life, but she thinks if she keeps making progress like she has been, the outcome will be positive. So in this case, no news is good news, and for the first time, I was happy to not have any answers.
We also had Madelyn's ear checked again, but she still has fluid in them related to her recent ear infection. They plan to re-check her hearing in 3 months to determine whether or not she may need a referral to an ENT, but the pediatrician did not seem very concerned.
We also saw Maddy's Pedatric Ophthalmologist this week. She agrees with our pediatrician that the delays are not related to her vision or her ONH and thought it might be a good idea to refer us to a geneticist. It can take as long as 6 months to a year to get in once referred so she wanted to get the ball rolling for us in case we decide it is something we want done in the near future. No sign of glaucoma and no change in her prescription (yay for not having to spend money on yet another contact or pair of glasses!) She did notice Maddy's eye is wandering out more than usual, which may mean we need to increase her eye patching time if it does not improve. But all in all, things went well.
And finally, when we got home today, I had a letter waiting in the mail saying our insurance has finally approved Maddy's therapy and we can schedule her PT, OT and feeding therapy tomorrow! I am a little nervous about fitting it all in to our already crazy schedule, but we are so excited to get started!
Wednesday, March 28, 2012
It's hard work being a 1 year old
I feel very lucky. It must have been fate that Dallas and I never moved away from Grand Rapids. We are surrounded by pediatric specialists in every field imaginable. I have met many mom's who have to drive hours to get the kind of care we just drive downtown for. We have a Rehabilitation Hospital 10 minutes away with a whole department and wing dedicated to pediatric therapy. So far our experience with them has been a positive one.
This week has been very busy, but all the appointments and therapy haven't slowed Maddy down one bit, she is still her silly self, always on the move and smiling.
The week started with a Physical Therapy evaluation. We were told Maddy is at about a 7 month developmental level for her gross motor skills. We made a list of lots of things to work on with her, and are working towards her being able to sit with proper posture, crawl and get up from laying down on her own, as well as standing with better balance and less assistance. They recommended Physical Therapy twice a week for her for now. Did I mention the therapist thinks they should use Maddy on their billboards? She is already winning over fans on her first day there!
Today we had a Speech Therapy evaluation and Occupational Therapy evaluation. The speech therapist told us they believe Maddy is having trouble with her speech and eating because of low muscle tone. They believe that her language will develop in time once we work on her muscle tone. They gave us some exercises at home and also suggested learning some baby sign language to help her communicate in the mean time.
The Occupational Therapist also evaluated Maddy at around a 6-10 month range depending on the area, but surprisingly, she did the best in visual-motor skills. They also recommended therapy twice a week, but will dedicate one day a week to feeding therapy to assist Maddy in learning to eat solid foods and drink out of a cup.
Looks like we have a busy summer ahead, but we are very excited to get started! Now we just have to survive a busy weekend of partying to celebrate an itsy bitsy birthday party!
This week has been very busy, but all the appointments and therapy haven't slowed Maddy down one bit, she is still her silly self, always on the move and smiling.
The week started with a Physical Therapy evaluation. We were told Maddy is at about a 7 month developmental level for her gross motor skills. We made a list of lots of things to work on with her, and are working towards her being able to sit with proper posture, crawl and get up from laying down on her own, as well as standing with better balance and less assistance. They recommended Physical Therapy twice a week for her for now. Did I mention the therapist thinks they should use Maddy on their billboards? She is already winning over fans on her first day there!
Today we had a Speech Therapy evaluation and Occupational Therapy evaluation. The speech therapist told us they believe Maddy is having trouble with her speech and eating because of low muscle tone. They believe that her language will develop in time once we work on her muscle tone. They gave us some exercises at home and also suggested learning some baby sign language to help her communicate in the mean time.
The Occupational Therapist also evaluated Maddy at around a 6-10 month range depending on the area, but surprisingly, she did the best in visual-motor skills. They also recommended therapy twice a week, but will dedicate one day a week to feeding therapy to assist Maddy in learning to eat solid foods and drink out of a cup.
Looks like we have a busy summer ahead, but we are very excited to get started! Now we just have to survive a busy weekend of partying to celebrate an itsy bitsy birthday party!
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