Drinking from a big girl straw cup!

Yesterday we had what we like to call a "good news" appointment with Dr. Ruiz and Dr. Pattisapu. We had been referred to Dr. P. first back in January of this year due to Madison's abnormally large sized head and concerns that there might be extra fluid surrounding her brain. We had a sedated MRI done in Feb and were relieved to find out that there was no extra fluid and thought we were home free! At her one year visit in April with Dr. Pollack (geneticist that follows her) she was again concerned about her head size and shape, so she again refered us to Dr. R who is a crainiofacial surgeon. He was not happy with the quality of the MRI scan so we again, had to have a sedated full CT. This time however, we were not lucky enough to get an early A.M. appointment and my poor poor Maddie had to go almost 14 long hours with not a morsel of food, or a drop of water. Well, turns out the CT is much quicker than the MRI and they wanted to try and get a shot without sedating her. Sedation is a big deal, she has to be admitted, and anesthesia is placed as if she were having surgery, and the recovery peri0d is a couple hours. When she was sedated for the MRI she also had to have some breathing assistance...so needless to say I was a little relieved they were not wanted to sedate this time for the CT, but I thought there was NO WAY maddie was going to lay there still enough to get a good shot since she was literally starving! Again my daughter proved me wrong and lay there still as can be..no need to sedate this time. Dr. Ruiz describes himself as the "carpenter" as Dr. P is the pluming, electrical ect... So, basically since her brain looks good and there is no seizure activity, the electrical, pluming ect is not causing her abnormal head shape. Dr. R had suspected a condition called craniosynostosis which causes the bones in the skull to fuse together too quickly therefore not leaving enough room for the brian to grow. At this point Dr. R doesnt believe she "fully" has this condition but she is of course in the 5% that he sees have a major marker for it. There are 2 areas of her skull that seemed to have fused prematurely however he is not suggesting the corrective surgery yet...this is a major major surgery that has a very very long recovery period, and it would really delay Maddie's motor and fine motor development at this age. But at the same time, if she is going to need this surgery it would be best to have it before age 2, since between birth and age two is the time period a babies brain grows the most. For now though, Dr. R is saying 'NO SURGERY' yaaaay!!

Now, on to additional exciting news! Maddie now has an Occupational therapist that will be coming to the house to work with her on Tuesday mornings. She came for the first time today and evaluated her fine motor skills, watched her play with blocks and manipulate toys. The therapists evaluation shows that Maddie is at the level of an 8-10 month old on a fine motor scale. I was a little upset seeing that we had the same evaluation done in early May showing the same result. I had hoped she had made some progress but she will feed herself and crawl and stand and walk when she feels like it and she is ready. We work on all of these things hours a day on end and when it comes down to it, Maddie is just not ready yet and she WILL do all of them when she darn well feels like it!! One thing she is mastering is the straw cup!! This is very very exciting because oral motor development occurs much quicker for kiddos with Down Syndrome who are able to drink from a straw cup early on. Her lips and tongue used to be very weak and we have been working on straw drinking since she no longer needed the simply thick in her liquids to drink (around 10 months). She finally today, graduated from her special "therapy" cip kup, to a regular old straw sippy cup, that I actually can buy at the store and not have to order online for $17 hoooray. Ms. Amy her Speech therapist is great and she has been working with Maddie since she was 4 weeks old. She encouraged me to keep trying to breastfeed Maddie even after six solid months of me pumping ALL of the milk she consumed. Happily I was finally able to breastfeed her a solid 3 times per day when she was 6 and a half months old. She did not have the strength in her lips to adequately suck and seal without losing the liquid gold or suck hard enough to keep my supply up until after 5 months of strength exercises for her lips, cheeks and tongue, that Amy taught me to do. Maddie is still nursing, but only in the mornings because she likes to bite me with her shark teeth any other time of day.

Well, I am off to feed the angel and work on some new tricks the OT taught me today.