Tuesday, March 3, 2009

March is here!!

It's been a busy few weeks around here (as always...) Tom is working lots of shifts in the ER...I hate not having him at home with us, but it is nice to feel a bit more financially stable. The hours he does now still can't compare to residency back in Tampa! I have my days where I miss working and having that professional part of my life...but I keep reminding myself am where I need to be right now, home with my children!!

I am finally feeling better....for about two weeks I felt horrible!!! Headaches, body aches, fever, cough and congestion. I am thinking it was the flu (I did get my flu shot) because none of my typical drugs I take for when I have a cold to get me through my day were working. I am just glad the kids and Tom didn't get it (or at least it was milder...Sofia did end up all congested and snotty last week and Michael had a little cough). But now we all all healthy!!!
The big event for Michael in the past couple of weeks was he had his first trip to the dentist...partly because it was just time since he is now 3 1/2, but also because he had a little run in with a shopping cart at the grocery store....he ran full speed towards me and slammed his mouth into the cart. Lots of crying, but no bleeding or swelling. He complained that his tooth hurt at first, and then no complaints once the tears dried. Well, his top front tooth started to change colors. It looks horrible in my eyes!! Michael did great at the dentist...he let her look in his mouth, they took an x-ray, and then he got ice cream and a balloon!!! The tooth looks okay on the x-ray, and the dentist feels it will in the short-term get worse looking, and then slowly fade over a few months. He goes back in May for his first cleaning. Tom and I are both about to get around to seeing a dentist also. I have been putting off the fact that I need my wisdom teeth pulled...I just need to do it!!

Busy days for Sofia as well. We increased her physical therapy from once a week to twice a week with the additional day at an outpatient clinic. So far she has cried through the two sessions she has had there, but I think she just needs to get used to this new environment and therapist. Their evaluation put her gross motor skills at about the level of a 9 month old. We are also increasing her speech therapy from once every two weeks to every week with the in home therapists. I am also thinking about adding in more outpatient clinic speech and occupational therapy after I see if insurance covers the physical therapy. I am hoping that I can get Sofia enrolled in an early communication research project through Kansas University. Sofia is on the list to be possibly screened this next month...they seem to think she fits what they are looking for (communication delays in a globally delayed child with no significant medical problems - that is Sofia!!). The study would randomize Sofia into receiving speech therapy in our home either once a week or FIVE times a week for 9 months....and that is on top of what she already gets!! They want to see in frequency of therapy makes a difference in language development. So cross your fingers that we get a call....they said that we should hear from them in a couple of weeks!! So we have a lot of people in our home during the week...luckily Michael takes it all in stride that all these people come to see Sofia....he just stays out of the way playing the computer and pops out every once in a while to see what's going on!!

We had a couple of appointments this past week. We saw the neurologist...an uneventful appointment. He reviewed her hearing test from last September...minimal to mild loss in low tones on the left side, but not concerning. Her neuro exam was unchanged (which is good). He feels reassured b/c she is so alert and does not want to repeat any testing now (no EEG or MRI), and may think about a spinal MRI at her next 6 month f/u. But a lot hinges on the BIG genetics appt on March 12th and the neurologist will do whatever they feel needs to be done. Sofia also had her 18 month well check with her pediatrician. Fairly uneventful...I just hate that every time they ask me all the development questions for her age and every answer is "no". She remains long and skinny...33.5 inches long (92nd percentile) and 19 lbs 12 oz (dropped to 3rd percentile - side note: she was almost 21 lbs two days prior at the neurologist's office, but her growth gets charted off the ped's scale). The pediatrician was slighly concerned b/c he won't necessarily see her again until she is 2, but he wasn't incredibly concerned. I figure Sofia has been on and off sick, during which time her appetite drops off, and she is so active now that she is burning more calories. We try to get as many calories as we can into her each day, but me just shoveling food into her goes against her feeding therapy and trying to get her interested in feeding herself. We are somewhat at a stand still with her feeding...she does like to grab the spoon and pull it to her mouth when I feed her, and she likes to play with her food....but no putting food in her hand to her mouth. Her feeding therapist (OT) thinks it will come as her cognitive skills improve and she decides that feeding herself is interesting.

Sofia has been doing great these past couple of weeks...she spends so much time on her tummy playing now and I can see that she is trying to figure out how she can just move forward and not have to roll all sorts of different ways to get to where she wants to go. She will eye what she wants while on her tummy, roll, look for it again, and adjust herself to roll towards it. She just doesn't have a lot of stability in her shoulders b/c of the hypermobility, so it is hard to support herself up on all fours. She is all about exploring...today she made her way under the computer desk and was playing with the cords. The last few play groups we have gone to she is all about rolling around to explore her surroundings. She is all about clapping her hands now too!!! She continues to slowly get stronger at Sofia speed!!! And today Sofia was so excited that I picked her up she wrapped her little arms around my neck and shoulder and squeezed!! It was like a real hug!! She has been really great at snuggling ever since she gained better trunk control, but typically her hands always go to touching my mouth (she has this thing with touching mouths and putting her fingers in your mouth...I am trying to get her to learn "no" with this habit). So I loved the hug...and she seemed pretty proud of herself too!!

No new pictures this week of Sofia...I was all about videos these past couple of weeks, and none of them are small enough files for the blogger upload...next time :) But I do have a couple from the night Michael decided he wanted to eat all our "clams" (Tom had made mussels...I can't believe Michael ate mussels...just look at his plate!!!


Take care everyone...I will update again after our March 12th genetics appointment!!!

Natalie

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