Physical Therapy

Madison continues to see Amy, her physical therapist twice a week. Madison works well with Amy, though she does try to test her every once in a while! Amy has been working with Madison since she was a little over one year old. That’s more than three years! Amy has been a huge blessing to our family, and we feel so fortunate that Madison has had her in her life for so long. Amy is so helpful with Madison and Madison loves her dearly.

Amy has put up with all of our "alternative" therapies, and supports all of Madison’s latest endeavors. There is still some controversy over what should go on Madison’s little feet, but I know and trust Amy so much, I tend to go towards what she recommends. One thing that was agreed on by almost everyone was a new pair of knee braces for Madison. It has taken quite some time to get these - but Madison finally received them in early December. Though they are still quite cumbersome, they are way less cumbersome than the last pair she had. These do not connect to her feet - they just wrap around her knee, but they do take up most of her leg. She doesn’t like to yet, but she can even crawl around in these ones. We’re still trying to figure out what to put on her feet, as her wobbly little ankles still need a bit of support. Right now she is in her special combat-boot shoes from Conductive Ed, but we think she will end up in a small pair of ankle braces.

Another progression Madison has made in her physical therapy and walking is she is steering her walker all by herself! She is a CRAZY driver, but she is finally figure out how to get the walker where she wants to go. Before, we had the wheels stuck so they could just go in a straight line She couldn’t control it otherwise. This was hard, though, because someone had to always be by her side, pointing her in the direction she needed to go. And to get through tight curvy spaces was almost impossible. She is so enjoying her new independence! But, like I said she is a crazy driver. We need to be careful that she doesn’t scratch walls and roll over people’s toes! I think she’ll get this pretty quick, though. She seems to enjoy being in her walker much more now that she has most of the control. Her new braces have made it a little harder for her to walk again, though, as they don’t allow her to tighten her legs up and hyperextend her knees. This makes her very unstable, but we have no choice. If she continues walking without the braces, though she seems much more stable, she will never learn how to walk the correct way and will eventually damage her little legs.

Speech

Madison continues making some amazing strides in speech. She is expressing herself so much more now. We generally know what she wants most of the time, and this is making life a bit easier. HOWEVER, when we can’t figure out what she is trying to say or sign to us, it is not a pretty picture. This kid has tantrums you wouldn’t believe (unless you’ve spent any time with her lately!) She screams so horribly loud. This is hard, embarrassing, frustrating, and we honestly don’t really know what to do when she is like this. We don’t allow it - at least at home - and usually just ignore the tantrums. Of course, this helps, but it is so not fun. When we are out and about, our only choice really is to remove her from the situation, but that can be very hard to do. (A behaviorist has just started coming to our house once a week to help us with this and potty training... Perhaps I’ll get to that story in my next update!)

Madison communicates in so many different ways. She has many more words these days, and still uses a lot of signs. Most of her words are still approximations, but it least she continues moving forward and making new sounds. Her latest, greatest, most beautiful sound is long O. She woke up one morning laying in bed saying "O" "O" "O". She was very impressed with herself! She sticks her lips way up high when she does this, and it’s pretty funny. So, then, it is our job and the speech therapist’s job to then figure out all of the new words she can say with each new sound she discovers. My first instinct was to try to have her stick an "H" on the beginning of her "O", which actually worked. So during Christmastime, we could ask her what Santa says, and she would say "HOOOOO". But, she still has a very hard time stringing sounds or words together. So Maddie’s Santa doesn’t say HO HO HO; he just says HO. That’s cool.

She is getting a new speech therapist at her school AGAIN. Madison will now be on her 7^th speech therapist. CRAZY. My only comfort in this, is that she has an amazing private therapist, Jamie, who we will continue seeing through all of this transition and continue with her as long as possible . (Long story - but Jamie is Madison’s therapist she was seeing at school.) Jamie has a beautiful spirit, and just really "gets" this little girl. She makes Madison work very hard, but Madison loves seeing her.

Madison also just received her "speech generating device". This is the computer I talked about in the last update. This also is a story full of drama and frustrations, and for now we just have a "loaner". We have to prove that this is something that she can use well, and after she uses it for about six months successfully, MediCal should provide her with her own. We have just started using her computer, and it is a lot of fun. However, it is quite an adjustment to how we do things, but we are trying really hard to make it work. One thing it will help her do that she has never had the opportunity to do with her sounds or signs is to string words together to make sentences. Giving her this structure of language will help her immensely when she does finally talk.

Teeth

Yes, teeth... We had some very horrible news from the dentist. Long story, I’ll try to remain brief. Madison has been seeing a dentist since she was 2 years old. Her first dentist told me that she had missing tooth enamel on most of her teeth. Interestingly, this is very common in children with "developmental delays". He also told me that many of her teeth were chipped (because she falls down so often...) However, he did not recommend x-rays, and could not clean her teeth because of her "behavior". He told me that eventually we would need to put her under IV sedation to take x-rays and to clean her teeth. He told me that we were doing a fine job brushing her teeth. At her 4 year dental appt. he continued talking about eventually doing this. I told him that it sounded like we should probably do this as soon as possible. He (begrudgingly) agreed and said he’d call me back after he talked to his anaesthesiologist. He never called me back.

So, needless to say, we were done with him. We found a wonderful new dentist who came very highly recommended and has a lot of experience dealing with special-needs kids. At Madison’s first appt. with the new dentist, she said that we need to do x-rays IMMEDIATELY. She said she could see one cavity, but that there might be a few more. We would, indeed, need to put Madison under IV sedation. She made all of the arrangements for this, and in the beginning of December, Madison had a very intense dentist appointment. They put her under anesthesia and took her x-rays. About an hour later they came to me with some pretty horrific news. Madison had SIXTEEN CAVITIES. I’m not kidding. She needed them all filled and needed to have 4 crowns put on her teeth. They said they might even have to do a baby root canal. Well, three hours later (and no root canal, thank God), all of her teeth were taken care of. She was taken very good care of, and though this was a very bad day, we were extremely pleased with the dentist, the anesthesiologist, and everyone else involved.

Madison had a very hard time coming out of sedation. It was a long day, but she never seemed to be in too much pain. We just need to keep trying our hardest to brush her teeth well, and take her in often to see the dentist. She has a long dental road ahead of her, but I feel that we are in very good hands.

The amazing part of the story is this. The bill for this procedure came to almost $5000. Our insurance covered $1000. The dentist told us about the Grotto’s program "Dr. of Smiles", which is a part of the Mason group. Their philanthropy is helping pay for children with special need’s dental work. Can you believe that? We applied for the program, and almost the whole entire bill was paid for. We are still shocked at the generosity of this group, and feel extremely blessed.

Kindergarten

Unbelievably, it is time to start planning for Madison’s Kindergarten year. She will start Kindergarten next fall. This is a heart-breaking subject for me, and I couldn’t even talk about it all for a few months without crying...

We have mixed feelings about where Madison should be for Kindergarten. And, we have trusted people telling us very conflicting things.

In my heart, I feel that Madison belongs down the street at our neighborhood school. This is the school that is 5 houses down the street from us that Savannah walks to each day. I have had many people tell me that this is where Madison belongs. She belongs with her sister, with her neighborhood friends, and should not be yanked away from this. The problem with this, is that our neighborhood school doesn’t have any type of Special Education classes. They have an "RSP" class, but that is for kids with some not-very-severe learning disabilities. Madison would probably need a full-time aide, and I am assuming this would be a pretty tough fight with the district. (One I am willing to engage in if we decide that this is the right place for Madison...)

There is a class at another school in our district for "Physically Handicapped" kids. (About 15 minutes away.) I am assuming this is what they are going to recommend to us at her IEP in the spring. I have had other very trusted people tell me that THIS is where Madison should be. At this school, she would still have the opportunity to be mainstreamed into a "regular" class at appropriate times. However, she would still have access to "specialists" and people who are used to "dealing" with kids like her. (Though are there really any other kids like Madison!?!)

I am hoping for some more guidance on this topic. If any of you out there have an opinion about this, please, please, share it with us.

In other Kindergarten news...  It took some work, but we finally did get Madison mainstreamed, for a half hour a day, into the Kindergarten class that is right next door to her preschool class.  She LOVES it, and is doing quite well.  With the serendipity that seems to follow Madison, our dear friend, Jodi, is actually the teacher in this classroom (with her wonderful partner teacher, Mrs. Flanders). The children have truly embraced Madison, and I think they are learning just as much from her as she is from them.  They love learning her signs, and she loves teaching them.  This has been a hugely positive experience for Madison and we are so glad we pushed for it.

Other

Madison has developed quite a sense of humor and it is so very wonderful. For a kid who doesn’t really talk much, her little personality makes up for it! The other day I asked her how her school day was. (She usually gives me a thumbs-up.) She gave me a thumbs down, said "BAA" (bad) and then totally started cracking up. How cute is that? She’s sarcastic and sassy and she can’t even really talk yet. (We can think dad for that sarcastic streak!)

We have also been very inspired by a 19 year old gal we are getting to know. She was born with conditions very, very similar to Madison’s. This is the first person we have learned about that has anything at all similar to Madison. It sounds like this girl and Madison were developmentally at about the same place at this point - walking with a walker and not really talking at age four. Well, this gal finally did walk independently - at 8 years old! She has now graduated from High School and is attending a junior college! This gives us so much hope and inspiration. Long story how we got connected - and we haven’t actually met yet. My father is her driver instructor - yes, she is trying to be get her license! I am mostly just corresponding with her mom over e-mail, and this has been absolutely wonderful for me. We hope to meet this gal and her family someday soon.