Early Intervention

Sophia had her EI assessment today. We all expected that she would no longer qualify because she is so advanced in many areas and because she no longer has the failure to thrive diagnosis due to weight. And as expected she was beyond her age in many areas. She is currently 22 months old, the following is a brief assessment of how she did.
Her Social-Emotional evaluation placed her at 27months, this is her ability to express her feelings, interact with others, ande ability to focus and attend to tasks.
Her Cognition placed her at 23months. This is how she engages in purposeful play, to discriminate people and objects and to to solve problems.
Her GrossMotor placed her at 27months. All assessors were impressed by her capability to do many things, at one point they had asked me if she was able to stand on one foot while holding on to something, I wasn't really sure. She stood up and did it without holding on. Little Miss Independant.
Her FineMotor placed her at 25months. This how she draws, and uses her hands to assist her in the world.
Her AdaptiveSelfCare placed her at 27months. This area was a struggle for the speech pathologist as she feels there still is issues with feeding but due to the fact that Sophia is able to use utensils, drinks well from sippycup, strawcup and bottle and chews/swallows well she scored higher. For feeding she scored 27months, for toileting she scored 25months, and for Dressing she scored 29months!! Yup, she is already into fashion:-)
In her communication department: in the receptive language she scored 25months, this is her ability to understand what is being said to her. Her expressive language placed her at 26months, adn this is her ability to express her wants and needs through gestures and vocalizations.
So needless to say she has graduated from the early intervention program, although all evaluators felt concern for her with her feeding issues, especially since we will be stopping the pediasure. They were trying to finagle a way to keep her on their service due to a clinical issue but due to the fact that we don't have an actual diagnosis they were unable to do that. They noted that she seemed a little jittery, which I have never noticed before, and they recommended further GI studies to determine if there is a lower GI tract issue that is preventing her from eating well. But at this point, what is going to happen is we have to wean her from the pediasure and see whether she gains or loses weight

?Low tone with Failure to thrive

Any one out there who has become aware of this blog becuase of Sophia and her failure to thrive: Have you had a diagnosis of Low tone for a reason for the FTT? We had an occupational therapist come out two weeks ago that questioned whether we are having such a difficult time feeding her because of some type of low tone in her mouth/tongue. She gave me several ideas to try, and then came back today with a whole new bag of ideas and tricks to try. Now she is wondering if there is a strenght issue, whether or not her tongue, jaw etc is strong enough to chew the food and move it side to side and swallow it normally. I find all of this truly interesting because no one has really questioned anything like this before, and everyone has kind of thrown their hands up in the air and been like we just don't know... So anyways after she watched Sophia again today she felt that it probably isn't a low tone issue, as she is not drooling alot nor does she have her mouth hanging open or anything similiar
So now she is recommending some type of swallow eval or something along that line. Or at least to have someone come and watch her chew and swallow that specializes in that type of thing to determine whether it is a tone issue or a strength issue. Oh joy! More doctors and testing...
In other news we started the albuterol for Sam yesterday and have been having to give it to him every four hours. Not sure why seeing how he is supposedly not allergic to anything that is blossoming right now but we shall see. He has been very quiet and mellow these last few days, I feel like all of this bronchospasm is sapping his energy. We aren't to our "bad week" yet, and I can only imagine how that will be next week. So prayerfully things will get better and not worse. We don't go back to immunology for another two weeks. Scared to know what his IgG levels are, but also scared not to know. I wonder when this gets easier?

Hmmm....

No new news today. I didn't hear back from the doctor. I am very disappointed about that. Sophia ate slightly better today than yesterday. She ate some yogurt and some shredded cheese. She ate some life cereal and some sliced turkey. I would say we made some progress but with her it just depends on her mood and what she feels like. I think that that is what is so frustrating. She may love something today and then tomorrow won't touch it.
We had Early intervention today and that went well. Her PT was impressed with the gross and fine motor things she is now doing, namely finally crawling. She will be one year old next week and she just started crawling this week. She is so proud of herself too. She also mentioned that she will most likely no longer be coming to service Sophia. She advocated to get an OT in to help with the feeding issues, so I am really hopeful that we can figure this out with her.

When I grow up...

I WANT TO BE JUST LIKE MY DADDY!!!

My budding photographer took these. Not bad for a two year old!!











Sophia had her first actual early intervention appointment today. The PT was very impressed with her strength but raised the question that maybe she is not crawling because she has a lot of pain when on her belly and therefore just cries and tries to get rid of the pain. I have wondered if she had pain when she was on her belly before as well. THis would go along with other stuff going on with her as she isn't gaining well and they are wondering whether there is some type of metabolic thing going on. The PT will bring an occupational therapist next time to work on the food aversion, I am hopeful they will actually come up with something that I haven't already tried and we can get this little peanut to eat. If anyone has any suggestions PLEASE share!!! Thanks
While we had Early intervention Matt and Sam went sledding. Sam had so much fun and talked about it for days. Matt also let him attempt to take some pictures. So cute! Hard to believe my little guy will be three in less than six months. Where did my little baby go?

Early Intervention

Sophia had her evaluation for Early intervention today. She was at or above her age level in the cognitive piece (play, discrimination, memory and problem solving. Her social-emotional level is also at 10months or above (interactions, attending skills, expression of feelings, and self-concept). Her Language comprehension skills are at the 10month level. Her language expression is at the 12 month level!!! Yup, she is very verbal and LOUD!!! As far as gross motor (sitting, transitions, mobility, and standing/weight bearing) she is at a 7month level, which causes her to be 30% delayed and therefore she qualifies for services for that reason, but also qualifies solely on the failure to thrive diagnosis. So we will now begin EI, I am hoping that they have some ideas for feeding her and getting her to eat more. We shall see.
We also had an appointment to at the doctors today. We wanted to do another weight check. She has gained two ounces since last time. So she is now 14lb15oz. She is almost 10.5months and she isn't even 15pounds. Little peanut! But at least we are gaining.
She is working on her second tooth. And is therefore chewing on everything that comes in contact with her mouth, including me!!! She is so cute and just loves Sam. It is so wonderful watching them interact.

Sam's appointment

Well after several months of waiting to see the new specialist we finally saw him yesterday. I must say he didn't initially rub me the right way. But that is ok, if he figures out how to make my son not hurt anymore than it is totally worth it.
So he is wondering if he has an overgrowth of yeast in his intestines from all the antibiotics that he had as an infant, that would explain the loose and bloody stools, the fevers, the rashes, the belly pain!!! Can you believe that it could be something that simple? So we now have to give him nystatin twice a day for 3months to see if that makes it better. They are also checking his urine and stool for some very rare bacteria that also could be causing these symptoms.
We will also do the allergy testing. It will be 4 half days of between 20-40 possible allergens that they will test him for. He also believes there is a food allergy component to the belly pain and fevers. So we will also do that. He is also recommending increasing the probiotics as well, more than double what we are doing now.
It was very overwhelming with all of his recommendations. But each thing is really an easy thing (meaning not surgery, not hospitalizations, nothing major) and so prayerfully this will solve his discomfort.
In other news we have now moved to weekly check ups for Sophia, and between adding her GI doc, endocrinologist, early intervetion and now all of Sam's stuff LIFE IS CRAZY!!!! I already felt like we lived at the doctors, we are now taking that to a whole new level, it is almost enough to be a full time job. OR at least it feels that way.