A new diagnosis

The appointment we have waited for over the last few months finally arrived, our follow-up at the neurodevelopmental pediatrician. She decided that Maddy had a lot of characteristics and met the basic criteria for Autism Spectrum Disorder, although it is what she called a "working diagnosis". She explained that it meant that Maddy would benefit from the treatment and therapy that a child with Autism has, but that it may not always be her diagnosis. It will help to open up some services to her that would benefit her. Although Autism is usually diagnosed at a later age (after the age of 2), and typically there is a more in depth exam or test, the doctor feels early intervention is the best treatment and therefore thought it would be best to give her this diagnosis now.

The doctor provided us with some local resources to contact and recommended a few new things. We will be looking into a play group for social skills and communication, and going to out-patient therapy for Occupational Therapy and Sensory Integration Therapy. The doctor felt Maddy's sensory issues are getting in the way or her learning, and that she can't seem to get past them to learn new things.

All we can do from here is to search out resources in our community and keep going with therapy. I am looking forward to finally seeing an occupational therapist who has specialized knowledge in this area, and I know it will make a world of difference.

After all the specialists, therapy, and worry, I come home to my little girl and she looks up at me and reaches out to hug me, and I know everything will be alright.

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.

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.

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!

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!

We Almost Have a Toddler

Maddy turns 1 next week. I know everyone always tells you that is goes by fast, but it's still unbelieveable how fast. A year ago, I was anxiously awaiting the arrival of our baby girl and thinking about how different life was going to be with an infant. Now I sit here thinking about how different life will be with a toddler.

It is the job of a mother to worry, and as my mom and family would tell you, I am excellent at it. There have been many days of worry over the past year, but each and every hour of worry has been worth it. I am the luckiest woman alive to be the mother of such an amazing little girl (I'm not biased at all), and to have such a wonderful and supportive husband. Madelyn is the sweetest and funniest little girl, and she brings so much joy to our lives everyday. It has been so incredible to see her learn so many new things this past year, and accomplish so much. She works hard for each and every new thing she does, and the pride shows on her adorable little smile every time.

Looking a head, we don't know what to expect and we take things day by day. There really aren't a lot of definite answers to most of our questions at this point, but one thing we do know. She will be loved, and she will be happy, of that I am sure.

Madelyn has qualified for Ken-O-Sha, the special education program for our school district. They have a wonderful program which allows a therapist (Occupational, Physical or Speech Therapist) to come to our house once a week to work with Madelyn and to teach us how to work with her to prepare her for school in the future. Now that we have gone through the evaluation process, we will start our weekly therapy with them soon.

This week will be a very busy week for Maddy. Monday we have our first evaluation at the out-patient rehabilitation center. We start with her evaluation for Physical Therapy. On Wednesday, we go back for two more evaluations for Speech Therapy and Occupational Therapy. Working with a PT through Early Intervention once or twice a month has already made a huge difference and I know more therapy will be so great for her.  And to finish the week off, Maddy's Grammy and Grampy are coming all the way from Vermont to celebrate her 1st birthday on Friday, followed by her big birthday bash on Saturday. I am so looking forward to this week in so many ways!