Our beautiful little baby is growing up! Madison turned two in June and she had a great time at her birthday party, which she shared with her big sister. She put on quite a performance and proudly showed off her new, much more efficient crawl. It was a very touching day.

The Official "Diagnosis"

We went on a diagnosis/prognosis search this summer and are quite glad we did. We had an appointment with a developmental pediatrician who did, in fact, give Madison an official diagnosis of Cerebral Palsy. The actual diagnosis was: "Cerebral Palsy: Mixed, with Ataxic, Hypotonic, and Dyskinetic Features". That’s quite a label... Receiving this diagnosis certainly brought on mixed feelings and was definitely hard to take at first. But we feel that we have come to terms with it and realize that this "label" will get her the many services that she will continue to need throughout her life. Click here to read more about the process of Maddie’s diagnosis and to learn about CP.

How is Maddie moving now?

Madison has discovered her own way of getting around. She has moved past her army crawl, and is finally very consistently up on all fours. However, she is not doing a "traditional" crawl. (Of course not, this is Maddie!) She basically moves her hands forward and hops on her knees to everywhere she’d like to go. It’s adorable and very ingenious of her. She has become quite speedy and can move just as fast as your regular crawler if she really, really wants to get something. We continue to be amazed by her motivation. She has to work extremely hard to move, but yet that doesn’t stop her. The therapist are very pleased with her motivation and explain that it makes it much easier to work with her.

Another very exciting development in Madison's "mobility" is that she is finally getting around in her gait trainer!  We have had her gait trainer for almost six months and up to this point, she basically just stood in it and it took a lot to keep her happy while in it.  (This included occasionally bribing her with chocolate chip cookies!)  But about two weeks ago, you could see the light bulb go off in her head when she discovered that her legs could actually make her move around.  It was a very exciting moment!  Since that day, she loves being in her gait trainer and is getting around quite well.  She is not moving her legs exactly the right way - she basically pushes both legs together and glides everywhere - but for now it is good that she is trying, she is happy, and she is purposefully going places.  We will soon begin work on fine tuning her leg movements.  It is a wonderful new place for her to be, though.  Now she hangs out in her gait trainer at playgroups, at the park, at school, and she especially likes walking around at the end of our court while all of the neighbors cheer her on.  It is a wonderful site and we are so proud of her.    

How is Maddie communicating now?

Madison is making a lot more noises these days, and it is very exciting!  She officially says "DA DA" when she sees Derek, and you can tell he is a very proud pop.  Her speech therapist, Carol, is amazing and works very hard with our little girl twice a week - once at school and once at home.  Carol is very excited about Madison's new sounds, and is working on developing these sounds into words.  However, Carol is also training Madison in using a lot more "Alternative and Augmentive Communication" devices, and Maddie is loving it.  We still use the picture cards we talked about in her last update, but Carol is also training Madison on electronic talking devices.  These include "buttons" that talk and communication boards.  Using these devices does not mean that we have given up on Madison's ability to talk, we are just using them right now to allow her to communicate while she is learning how to talk.  They have helped eliminate a lot of the frustration Madison would have if she had no way to communicate.  Madison is also using a lot more gestures to communicate and now happily signs "more", is pointing, clapping, and imitating a lot more.  All of these are precursors to talking and it has been so much fun watching her develop these new skills.

Maddie did start her horse therapy program, and this has been an amazing experience.  It seems like that horse was made for Madison! Her horse's name is Bullseye and she gets so excited when she sees him.  She actually gets a little more excited when she sees the donkey, Gertrude, but that's another story!

There are so many therapeutic benefits to riding on a horse, but the most prominent exercise the horse can give someone is to strengthen trunk muscles. This is exactly what Madison needs. Her trunk is the weakest part of her body.  Just sitting on that walking horse gives Madison more exercise than she receives in any other therapy. She has to work so hard to sit on the horse, but she is so happy to be there (most of the time!) she doesn't even realize she is exercising.  Her teacher, Kim, also does exercises with Madison while she is on top of the horse that will help her gain trunk strength.  She is completely exhausted after this workout!  And fortunately, little miss Savannah has gotten over her "fear" of horses and she usually rides for the last 15 minutes of Maddie’s lesson. She loves coming and watching her little sister. (Or sitting in the shade and reading her books!)  To learn more about therapeutic horseback riding, click here.

Maddie Started Preschool!

...and is loving it!  The first couple weeks were a hard transition for her, but she is having a great time now and didn't even cry when I left last week.  Her teacher, Sonia, is amazing and is doing some wonderful things with our little girl.  Maddie goes to school two days a week for four hours each day.  Currently, there are five students in her class - with one teacher and two aids!   This is considered an "Early Intervention" preschool and is for any child who is at least 25% delayed in one or more areas.  So, she has a variety of children in her class who are all very sweet and kind.  The service she is getting there is amazing.  They make breakfast each day together, and the teacher turns this into a wonderful learning opportunity.  She understands and loves the routine.  She is also involved in a program at preschool called "MOVE" which is for any child who is "non-ambulatory" (not walking yet).  It is another type of physical therapy for her, in which they make sure she is "upright" the entire time she is there.  Their goal is to get her walking.  This is the hardest part of her day and she is struggling to be happy during this particular 45 minutes...  But besides that, she is very happy and we feel confident in our decision to have her go to preschool so early in her life.  And, no, we decided not to let them take her on the bus!  A lot of people tried to convince us to stick our baby on a bus to get her to school, a service which is offered and encouraged, but we just couldn't do it.  It's a long drive to get her there (about 30-40 minutes) but since it is only two days a week, I'm willing to make the trek out there.   

Maddie's Development and What it All Means...

Madison's "Developmental Status" (at 23 months old: May, 2006):

• Social Skills: 14 months
• Communication: Expressive: 9 months, Receptive: 18 months
• Self-Help: 12 months (some skills up to 15 months)
• Gross motor:  9 months (some skills ups to 12 months)
• Fine motor: 10 months (some skills up to 14 months)
• Cognitive: 11 months (some skills up to 16 months)

We have a new understanding and appreciation for what our little girl has accomplished over the last year. After speaking with my dear friend, Jill, who is a Speech Language Pathologist, she has put Madison into perspective for us. Jill explained that the most important thing she saw with these scores is how high her receptive language was. This is such good news! Receptive language is what someone understands. Though she is so low in most other areas, the fact that she is understanding us so well exemplifies the potential she has and is proving to us that her cognition is not affected by her muscle problems. It also means that when she finally can move her mouth/cheek muscles correctly to speak, it should come quite easily to her because she knows the meanings of so many words. And the fact that she is still not talking isn’t as worrisome as we were thinking. As Jill explained, there is no way she is going to be able to move all of the tiny muscles that are required to speak before she can move her other, bigger muscles throughout her body the right way. This is true, too, for her fine motor skills. You can’t move your hands very precisely if you’re still working on developing the muscles in your arms. And you can’t move your arms correctly until you have core trunk strength, which is Maddie’s biggest weakness. So, basically, it is all interrelated and we just have to be patient. It will be like a domino effect, and everyone seems to think that when she starts walking, the dominoes will start falling into place. (Pretty good analogy, huh? I came up with that one all on my own!) We are seeing this being proven right in front of our very eyes. For instance, Madison has finally developed the "pincer grasp" with her fingers and kids usually perfect this when they start crawling. So the more she moves, the more everything else will start working.  More "inchstones" are on their way, and we are very excited to see what she is going to do next!

I also talked to Jill about the value of all of Madison’s therapy. Needless to say, we are getting a little burnt out on seeing so many therapists so often. Madison sees at least one therapist a day, and on Thursdays she sees up to three!  My momentary thinking was that perhaps Madison would have made the same gains (since they weren’t even that big...) even if she didn’t attend all of her therapy. We just don’t seem to be experiencing any significant short-term effects of the therapy. Jill explained that the purpose of Early Intervention (umbrella term for all services Madison receives) is completely long-term. We may not see huge gains immediately, but all of this therapy may not actually come into play for a couple of years. Not having it, though, would be detrimental. We are teaching her new ways to move her body. People are evaluating her all the time to make sure her body is growing correctly and doing something about it if it is not. When she is ready to move a certain way, she will now know how. Without the therapy, she could move incorrectly which could be very damaging to her body.

So Jill’s pep talk (thank you Jill!) gave us a new understanding and appreciation for what we have been doing now for more than a year. We are extremely motivated to forge ahead and make sure Madison is getting absolutely everything she needs.

The Botched EEG

We had a pretty horrible experience trying to get Madison’s EEG done. This is the long version, so skip this paragraph if you don’t want to know all of the details!  To make sure Madison wasn't having any seizure acitivity, we took her to get an EEG done last May.  For this test, you have to "sleep-deprive" the patient - meaning we couldn’t put her to bed until 11pm, and had to wake her at 5 am for her 10 am appointment. This was not fun, but staying at Aunt Kimmi and Uncle Tyson’s house in Sacramento - near the EEG lab - was a lifesaver. So after all of this, we get her to the appointment and had Nurse Ratchet tending to us. I had to get her to sleep, and once she was sleeping, they attempted to place 24 electrodes to her head. Well, she woke up on number 18. Needless to say, she was frantic, freaked out, and we couldn’t get her to calm down. The test was over, and we got no results. This was a bad day. The "episode" for which she was having this done was not hugely concerning, and the Dr. wants to wait and see if another episode occurs before we put her through this test again. We are happy with this recommendation, and there has been no sign of any type of seizure.

Enjoying our Little Girl

Our family had a great summer and did a lot of fun things.  We had a lot of opportunities to just enjoy both of our girls and it was wonderful.  We went on another family trip to Yosemite, and it was the first time in a long time everyone seemed to just forget that Maddie had any "issues". We just enjoyed her and she was a doll. No therapy, no appointments, no worrying about what other people think, just Maddie... We have gotten quite used to toting her around and she has become quite a good traveler (albeit getting a bit heavy to carry!) I think she needs a little more time in her life to just be her, without being pushed, without being prodded and moved in ways that are so uncomfortable to her. Trust me, we will still work her and probably work her too hard, but she needs these small reprieves and to just "get away from it all" (don't we all?).

We have such amazing people in our lives and feel extremely supported and loved.  Yes, this has been hard on our family, but we have all learned so much about life and love.  Madison is a gift to our entire family.  Nana and Papa help us so much in every way possible and are so supportive of everything we do with Madison.  Grandma and Grandpa are our cheerleaders and always make us look at Madison's abilities, and take so much focus off her "dis"abilities.  Grandma always wants to know every last detail of Madison's day, and it is so nice to have someone to share the nitty gritty details with.  Both sets of grandparents have shown us the true meaning of unconditional love and for that we will always be grateful.    We thank all of our close family and friends for their unfaltering acceptance and never-ending encouragement.  This isn't the easiest road to travel on, but we are enjoying the most amazing and bumpy trip of our lives!