October 2005 School Picture

3 years 2 months

Whitney started really putting two concepts together in words this week. She had one cookie, and said "cookie" then Daddy gave her a second cookie and she said "Two cookie". That was really the first time it was not a single concept like "I-don-wan-to" which was usually one word instead of 4 separate concepts. She has tried to get out "I love you", but it is much more complicated and contains about 10 words instead of 3. It's pretty cute though...she grabs my face and turns it toward her to kiss me after saying it.

Her new nanny, Rose, is working out great. Whitney is really bonding with her. I'm sure she misses John, but Rose is good for her.

3 years 1 month

Whew what a week. We had quite the doctor week. My "mummy" child had a 24 hour EEG yesterday. This is a picture of her before we left the neurologist. She has had some small absence seizures and we are trying to figure out what is going on. That lasted from 9 AM until 11 pm when I found the cords to the equipment WRAPPED AROUND HER NECK while she was sleeping. Thank god we were checking on her. I freaked out and ripped it all off. Of course we never saw any seizures yesterday. Oh well.

Our Celiac disease test monday came back negative, and the orthopedic doctor says there is nothing orthopedically causing her to not walk. SIGH. Back to the drawing board.

Whitney is in her 3rd week of school. She is in an ESE classroom in a local elementary school. There are 5 students in her class. There is one teacher, one aide, and therapists that rotate in and sometimes take her out for therapy. So far we are really happy. We have seen improvements already. More of a willingness to want to try things. Her teacher says she is so happy while at school. We knew she would love it. She is so social.

3 years old

Whew. I guess these months went by quickly! It seems like I just posted. We had a 3rd birthday this month. We celebrated in Atlanta with Granny and her Aunt and Uncle. We also had a party with her Godmother, Karen and her kids. We got a lot of celebrating in!

Whitney just had a Dr Appointment and next week we go back to the neurologist. I asked specifically for a celiac disease test, and for a visit to the orthopedic doctor. We will get those appointments soon. We could not find any reference to a celiac test in her bloodwork, and I just want to know. It will mean another blood test, but we are old hat at that. The orthopedic doctor may have some suggestions for whitney's walking. Her legs are developing unevenly...right knee larger than left, left calf larger than the right. Her gait is off due to this. She swings her right leg out and around when she takes a step, but her left goes nice and straight. Her Dr. measured her legs and thought they were the same length. The orthopedic doctor will confirm that too, becuse her PT thought they were different lengths. A sleeping MRI would be used, or an Xray (which she will never hold still for). We get a test result at the neurologist this week from a urine test we have tried to do for about 6 months. Had to potty train first. Ruling out more possiblities. I know we are getting closer to the last resort test...the muscle biopsy.

Whitney is still not walking by herself. She is much better at standing and sometimes forgets to hold on. We got her a Kaye Walker and she is not flipping out as bad as with the other walkers we tried.

She starts school August 8 in the ESE pre-K program at Quest Elementary. Jeff and I are excited for her. She qualified for 5 days a week, and those are long days (8-2). We are allowed to pick her up early if we want; there are no attendence requirements for pre-k. I think once she sees kids walking around (there are kids on age level in these classes too), she will want to use her walker to keep up.

Whitney stands!

Well, we had a week! Whitney stood all alone, not touching anything for about 4 minutes. We had to trick her and slowly move away from touching her. When she discovered we were not touching her, she fell. It was a huge start!

We also discovered that her right leg is about 1/2 inch shorter than her left. A simple lift insert should fix that! We hope that will make her more steady.

EEG

WHEW, what a day yesterday was. Whitney had her EEG. I don't EVER want her to go through that again. I suppose I expected her aweful behavior because she is hypersensitive and hates things on her head, but I didn't realize how bad things would be. This was the worst test yet...worse than the blood tests. It was so aweful that I am DONE with tests. I just don't care THIS much to know what is going on.

We tried starting this in dad's lap, but she was a wiggle worm. We put her on the table, and she said "Scared." We tried to reassure her. They started the test by rubbing small areas of her scalp with a scratchy blue paste so the electrodes would adhere better. Screaming. I had to lay on top of her to hold her down. Then they dipped about 20 electrodes in a paste and stuck them to her scalp. More screaming, more holding. When they tried to wrap her head in bandages to hold everything in place, it got REALLY bad. They wrapped her all up so she looked like a nun. She was MAD.

We transferred her to dad's lap and she looked like the Terminal Man with all these wires coming off the back of her head. Then, the technican said...it would be great if she went to SLEEP. My god. She is losing her mind and they want her to sleep. We did get her calmed down with multiple readings of the Wheels on the Bus book and a bottle. They did a stobe light test. Then, since she would not sleep, they put BANDAGES over her eyes. She was so scared. That didn't last long.

After this was over (30 minutes of actual testing), we took off the bandages and extracted the electrodes from this mass of sticky, long, red hair. They washed her head and hair off, and she felt better.

We came home and www and I held each other for a long time.

I can't do this any more. So we don't have insurance to pay for therapy due to no diagnosis...who cares. I don't think she will need therapy for much longer anyway. Her speech therapy needs are drastically decreasing as she is enunciating and talking more and more (she said "No School!" this morning.), her fine motor skills are improving a lot, and it won't be long before she walks.

It is good we KNOW there is nothing discernable wrong, but we have exhausted the tests. No need to keep grasping.

MRI

31 months:

We had an MRI this week, again. Whitney's brain is mature now, so it is good timing. I hope to get results toon. We have an EEG next week to see if we can find out what is causing the absence seizures. I have a feeling we will see negative results again...as an hour procedure is not going to pick up something that is so intermittant.

We visited the neurologist last week. Whitney's hypotonia is not showing any changes. She is so flexible, it scares people. I hope we can turn that to a positive as her muscles get stronger. They certainly are stronger, she can walk holding hands pretty well, but we are now dealing with the "I can't" syndrome. She is quite used to not walking.

Cognitively, we are encoursaged. She talks up a storm, it's just in Klingon. We are starting to understand her, however (her therapists do too so we are not crazy), and she does speak in some very quick sentences (Already did that, I can't do it...). She is able to look at pictures of animals and say what sound they make (cat, cow, sheep, pig) althought the sheep speaks in japaneese (Meh instead of Baa). I'll take it.

She is certainly coming along, although her cognitive is far outstretching her physical which still rests at less than a year. I don't really care about the physical; I just want to find out how to help her learn without needing complete use of her hands and legs.

Today we went to a meeting to start staffing her for school in the fall. She would go to Creel Elementary for their special preschool program. They have a developmental delay pre-k class that is from age 3-kindergarden. The classrooms start at about a 3 student to 1 teacher ratio, and they build through the year to a higher ratio, adding aids about every 6 kids, to a max around 12 kids. They send a bus to our house to pick her up, and have an aid on the bus if we feel she needs someone to assist her. The program is 5 days a week 8(?)-2:30. I think www will love it, but we need to reduce naptime before then. She will conk out in the middle of the day! I do know they have naptime though. Good thing. We have a lot of assessments to go through before that time..IQ tests, physical tests, self-help tests...all to staff her properly with therapists and teachers.

I'm Back

It's been a while. I needed a break. When we went to the geneticist, her main point to us was to stop seeing doctors. We did and it felt great.

Whitney finally started feeding herself about a month ago. How that has changed our lives. A babysitter took her out to eat and Whitney ate everything she was given by herself. Ever since, we have not done it for her. We help her eat with a spoon, but she is getting very good at that too. It is such a blessing.

We just went to the Neurologist. We discussed an absence seizure we observed and some walking issues. Whitney is still not walking. When she practices (amid the screaming), she scissors her legs, which the doctor said is unusual for hypotonia. It is more assiociated with Hypertonia. Whit is definately not experiencing too much muscle tone, so something else is going on.

We are going to do another MRI now that her brain is fully developed and an EEG for the seizures. We are trying to get another urine sample for a mucopolysaccaride test, but whit is still not potty trained, so that complicates matters immensely. I think I'll be potty training this weekend. At least he didn't ask for a muscle biopsy at this point.

Whitney has tripled her vocabulary since her last appointment, and is speaking some sentences when stressed or when she REALLY wants something. She told us "I can't do it" the other day during physical therapy. I'm not dreaming...two other people heard her and understood her. She also tells us "I do", "I want ....", "I can", and other things. She signs and says "cookie," which is about the cutest thing I have ever seen. I think she has made progress because we got her ears cleared up finally.