You know you spend too much time at the Children's Hospital when...

the anesthesiologist remembers who you are. Good thing we like her, because she seems to see us every time we go in. Anyway, on to today's adventure, Maddy's hearing test.

I will start by explaining the history of our concern. Maddy is progressing so well in so many areas, but socially we see a difference in her compared to other children her age. For months we have been discussing with her doctors that she does not respond to her own name, or even look at us when we try to get her attention with our voices. She also doesn't have any words yet and only babbles a few sounds.  We have had tympanograms multiple times which showed that Maddy had fluid in her ears, but she had always been recently sick, so it was difficult to tell if this was the problem. We recently visited an ENT who also checked her ears and thought the fluid was minor, but wanted to re-check to see if she may need ear tubes. The physician today seemed to think the fluid was almost completely gone though and not the issue.

That brings us to the BAER test, which stands for Brainstem Auditory Evoked Response. They put Maddy to sleep and attached electrodes to her head and behind her ears and played sounds into headphones while measuring the response of her auditory nerves and brain. What the test told us was that Maddy's brain is receiving sounds normally. Unfortunately the test cannot tell us whether her brain is processing those sounds appropriately. I am pretty convinced that my daughter has Auditory Processing difficulty which goes hand in hand with the rest of the sensory processing difficulties. Now I just have to find someone who can teach us how to help her (oh, and get a diagnosis I guess, I forgot I don't have a medical degree).

We also met with our Early Intervention PT this week who mentioned she planned to refer us to a social worker this fall to assist us on working with behavior and social intervention.

Now to end this post on a lighter note. Feeding therapy is going great! Maddy has made great progress with her eating, and we are really just focusing on getting her to chew and use her tongue on both sides of her mouth (she only uses the right side). Her OT at feeding therapy thought she was so cute, she recommended her to be photographed for their website!

Some creative home therapy (with pictures!)

Our therapists have given us plenty of good ideas to turn our home into Maddy's own personal therapy space, some of them are messy, but it has been a lot of fun. I posted some pictures of some of the things we are doing with her. We don't do them all everyday, but we do attempt to do some of them everyday.

 We put Maddy's snacks into an ice cube tray so that she has to practice using her pincer grasp (picking things up using her pointer finger and thumb)

 Maddy has sensitivities to some textures, so to help desensitize her, therapy recommends that we offer her lots of different textures in different ways. She is sitting in a laundry bin full of dry rice and beans in this picture.

Maddy really enjoys and craves bouncing and rocking motions as well as deep pressure on her joints and tendons. We bought her a trampoline so that she can learn to bounce on it herself, she almost has it figured out! By offering her what she craves, she will be able to focus better on learning new things. 

We also give her deep pressure massages to help relax her.

Here is a picture of Maddy wearing her new Ankle Foot Orthosis (AFOs), which are the little braces on her legs. They help to keep her knees from locking and keep her feet in proper position. This will help strengthen her legs and improve her balance.

The vision consultant at Early On highly recommended these bubbles. They are called touchable bubbles and don't pop when you catch them. We are using them as a tool to get Maddy's eyes to focus on them, and we will be working up to her being able to see them and follow them as they float in the air.

Maddy also enjoys vibrations, which are soothing to her. Her therapist gave her this vibrating tooth brush, which Maddy loves to hold in her mouth. 

At night, we put Maddy in dark room, often with a black light and 1 single white image or object so that none of her other senses are being stimulated, this allows her to focus only on using her eyes on that one object.
In this picture, we are using an object that lights up and flashes instead. (It also doubles as something with texture to desensitize her hands to the feeling!)

Messy Play! Using different textured foods (this is chocolate pudding) is another example of desensitizing Maddy to different textures. We have also used jello and playdoh.










As you can tell, the fun (and mess) never stops at our house! Although it is a lot of work, most of it Maddy truly enjoys, and so do we!

The results are in...

Maddy finally got her AFOs (Ankle Foot Orthosis), they are very small plastic pink and white braces that she wears on her feet and lower legs. She does not have to wear them all the time, just when we are working with her on practicing standing and walking. They help to keep her feet in the proper position and her knees slightly bent instead of locked. Maddy seems to be doing well with them, she likes to bounce when she stands in them. The first time she had them on she kept squating like she was skiing and about to hit a big jump. I can already tell they are going to help.

The moment we waited for over the past few weeks finally arrived. Maddy went to Grand Rounds with all of the local Pediatric Ophthalmologists last week and today we finally heard the results. It is satisfying to know that 3 doctors who are all specialists agree on her treatment and that we are on the right track. However, there have been some concerns over the last few weeks that her right eye, the "good eye" has been fluttering back and forth (nystagmus). The doctors told us that it is not surprising, and what it means is that Maddy's developing her vision and focusing in smaller objects, it is also a sign that the optic nerve in that eye is, after all, smaller than normal. So now we are left wondering if she will have normal vision in either eye. Unfortunately, it isn't a problem that glasses or contacts or surgery can correct and we just have to wait and see how her vision develops.

The doctor also mentioned that some of the areas Maddy is still having difficulty with (picking mommy or daddy out in a crowded room from far away, or focusing on objects not close to her, not mimicing things like clapping or waving), could be signs that her vision is not quite as good as we have originally hoped. But they tell us there is still time for her vision to further develop, so it is not all bad news!

She has needed more stimulation and sensory input lately. We have been experimenting with lots of new ways to help her with this, but I will save those antics for another day, perhaps with pictures?

If it's not one thing, it's another

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.

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.

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.

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.