25 months

Months: A lot is happening lately.

The hurricanes have really cut into our therapy schedule, but we are trying to keep up at home. She has had a lot of friends over lately, so that has given her a good workout. Aeden and owen came to stay overnight because they were without power. Her cousin Jaidyn came down from Pennsylvania and stayed for a few days. She is 9 months and is starting to stand and walk. I think that gave Whitney something to think about. She absolutely knew that Jaidyn was a baby, but yet saw her standing. They were very cute together. Whitney would put her arm around Jaidyn to help her up to a toy. She kissed her A LOT.

Whitney is able to stand for about 2 minutes with just a little bit of ankle support from us. She doesn't have to hold on. She is still scared, and very weak, but the braces seem to give her some confidence. She still hates them. I guess it's like bike training wheels....You hate them but they help. You want them off, but then you want them on. Whitney really seems to be beginning to think that standing up is good. It's becoming a preferred status. I remember when she started crawling that a similar thing happened with her being on all 4's instead of laying on her belly. I don't think walking is far off.


She visited the Audiologist today. Her ears are clear of fluid. He wanted to wait 3 months to test her hearing again, so we will go back in December. She will be a little more mature and able to indicate more in the tests.

Whitney's primary care physician's office was destroyed hurricane Frances. Trying to get her records has been difficult. We picked a new doctor for her and need to get her in asap because we have referrals to go to the insurance company for specialists. It's been a heck of a week. The insurance company granted us some gratis referrals to tide us over for this week's appointments. That was very nice.

A cute thing happened yesterday. Daddy came home, waved hello, and started out the door again to take our sitter home. Whitney started to cry. He stopped, came back and patted her. She still cried. He asked what was wrong and she made the sign for FISH. Well, we then knew that she wanted to go feed the fish and she thought he was going without her. This is something they do every day and she knew that it was time to go feed them. GOSH it was cute, and encouraging.

25 months: We got her leg braces. They look great. We got Yellow padding, with heart velcro. She is getting used to them now. Sometimes she seems to like them, sometimes she seems frustrated. She can crawl, but seems to have to figure out how to turn around in tight spots. The hatchback shoes worked great. We had to take out the insoles, but the 6's fit well on her 4.5 foot with braces.

The other night we were at Frankie's Wings, where they give lollipops for dessert. Whitney saw them and reached for one. She knew exactly what it was. Now, mind you, she has seen a lollipop maybe once that WE know of. She could barely wait until Jeff had it unwrapped, grabbed that lollipop, held it correctly and LICKED it like a professional lollipop eater. We sat there amazed. SURE, she can't eat REGULAR food, but lollipops are DIFFERENT. I did cry, but we tried to not let her know our feelings. It's the surest way to make her stop doing whatever she is doing. Even her therapists say "Whitney, that was aweful, just aweful" instead of praising her...jokingly. As soon as we praise, she stops. That lollipop was sure something though!

We went to a wedding this weekend. We got there 15 minutes early, and the wedding was very late. She was so good. Got a bit twichy but did well. The reception had LOUD music. I thought she would flip out, being so auditoraly defensive, but she laid back in her dad's lap and put her fingers in her ears. She actually did quite a bit better than her dad...who left the reception and went outside to get away from the music.

25 months: We are having profound walking progress lately. Whitney will pick up and put down her feet when we hold both her hands. It is so joyous to watch. I don't think it will be long before she is standing on her own. Today at therapy, we put whitney into the gait trainer. She took off! I had never seen her try to walk in that on her own. It was very cool.

In speech therapy, they are starting to use a communication board to teach her to communicate with words. She knows the button concept very well with single buttons. She can't wait during circle time for that button to come around to her so she can push it and hear what it says! Now it is time to transfer that to more buttons with pictures/words attached to it.

I was looking at several of these boards for home use. A bit pricy but it might be worth purchasing.

Go Talk ($180.00...nice size, portable)

Listen To Me ($90.00...smaller)

Tech Talk ($395.00...The one used at therapy)

24 months: Visited the Neurologist. He suggested that we wait on the muscle biopsy. We are going to a geneticist. Our Neurologist says that nothing was found on any of the genetic tests but maybe the geneticist will see something she fits into, like a syndrome. It's worth a shot.

She is doing great at standing while holding on to things. She is still really weak and shakes while she weight bears, but she is getting stronger. Our house now looks like a gym...we have a dark gray play mat on the floor so her toys don't scoot easily. It helps her hold on while standing. I can't wait for her orthodic braces to come in. This week or next probably. It should give her some extra support.

I have ordered some shoes to wear with the braces. They are supposed to be easier to put on. We have such a time already putting on her shoes because she curles up her toes. This should make our life easier.
Hatchback Shoes

School started up here in our county, so her EI teacher should be back soon. That will be nice.

24 months. Went back to the audiologist. We redid the the tests we did last time and she failed again, but the Ear, Nose, Throat doctor found fluid in her ears. That could absolutely be affecting her tests.

We are going to wait 6 weeks, then check her ears. If she has no fluid, we will test her hearing again, if the fluid is still there, we will have tubes put into her ears.

Fingers crossed that this one is fixable!

 

 

24 months: We have had audiology testing done. Whitney did not pass the first set of tests. That could be behavioral, so we are going to repeat the tests. She did not acknowledge the left ear sounds at all, so there is some concern. She is definately hearing speach with her right ear. If the tests come out the same the second time, we will go to Arnold Palmer hospital for sedated hearing tests.
 
We have found some great vibrating toys for whitney. They really keep her attention longer than other toys. We found a sesame street ball that vibrates and bounces around. She LOVES it. Our sitter HATES it. I can understand.

Ok, this is a little embarrassing. I am canvasing the stores in melbourne for a vibrator....yeah. I know. It seems that massaging vibrators really awaken whitney's use of her hands and feet. They gave her a little one to hold in therapy and she never let go. It was wild. She won't hold things very long otherwise. They held it on her feet today and "pop" out came her feet and she stood up when we asked. It was phenomenal.

So now we came home with a loaner and I am tasked with finding a tiny little vibrating massager. I found a larger one at Walgreens, but she can't operate it (has no constant "on" position). I can use it on her before therapy session though.

I'm scare what I'll find if I look on the Internet.......

23 monthes: Our house is starting to look like a physical therapy ward. We have a variety of devices to help whitney learn to walk.

We started with a Creepster-crawler like this: http://www.flaghouse.com/NEWITEM_Detail_Main.asp?ID=36887 to help her crawl. It did help and got her up onto her hands and knees. I'm not sure she ever really moved it under her own power, but it did allow her to weight bear for extended periods of time. She eventually figured out that she could just hang from the straps, and we had to give up.

We have a gait trainer like this one: http://www.icon.co.za/~firechildren/helpothers.htm, but it didn't give her legs enough support. She was able to bend her legs and hang from the top straps.

We just got a new contraption, another walker...similar to this one: http://www.aodmobility.com/SMART/smart.html This one has braces for her legs and attaches on to a pair of shoes. She gets the support she needs to straighten her legs properly. We have some problem with her dragging her right leg...which has always been her weak leg. Her left seems to know how to walk...pick up, kick, put down. Then she drags the right. She will stay in the walker for up to an hour right now, so at least it is getting her to stand! She doesn't have much choice really.

23 months: I called for the test results. The high resolution genetic testing was all negative.

Guess that is good news and bad news. Relief but worry.

Neurologist told us last time that if this came back negative, the last test is a muscle biopsy. I barely made it through the blood tests. However, he said it can uncover some conditions that are correctable, so it is probably worth doing.

Info about muscle biopsy: http://www.nlm.nih.gov/medlineplus/ency/article/003924.htm

It sure is hard to be positive all the time. Actually, I don't even get close to all the time.

There we sat in a meeting at work, and everyone started talking about their kids going through orientation at college. I had to wonder if Whitney will ever have that chance. I hear of other friends with kids her age who are able to communicate "I want a peanut butter sandwich." God, if I could only get her to try a peanut butter sandwich, bite into one, chew one, hold one.....

I spend a lot of time crying. Lots of time wondering if this was my fault somehow, wondering why we are going through this, feeling selfish for wanting a "normal" child with whom I don't have to constantly think "is this theraputic?"

I think I'm past web support. I need some face to face support with other parents.

23 months: Whitney sure is a 2 year old. She is now refusing solid food, and most soft foods. I think it stems from the sudden attention paid to her mouth by the speech therapist and us. Suddenly, we tell her to "Chew" all the time, and show her how (she does not really chew food...she still mashes). Things are being stuffed in her mouth to help her learn how to chew. Defiance reigns. We got over her refusal to take a bath, we will get over this too. It's a bit frightening since she is so THIN already. It's a good thing she was able to put on a few pounds recently, she will need it.

On a cool note, she is learning quickly to drink from an open cup. I have to help her put her hands on it and position her thumbs, but she can lift and drink. I have to help her set it down. Oh where are the sippy cups without lids? No wonder speech therapists hate sippy cups today. They are all so counter-productive to learning real skills.

Whitney has also started climbing. Still no desire to stand, but she will pull up on furniture using her arms just so she can climb up on it. Unfortunately, this transfers to wanting on the table when we go out to eat. It's a little strange when your 2 year old is sitting on the restaurant table.

I'm mustering courage to call for Whitney's last test results. Genetic testing should be back. I'm a bit scared.

22 months: Six months have passed since we started Whitney's therapy. It seems like a flash in our lives. All of her evaluations are coming in...some good and some disappointing. Her social skills are around 16 months; her cognitive skills are around 15 months, and her receptive language is around 18 months. All of those are very incouraging, and I am exceptionally pleased at the speech results. One thing about her skills is that they are not very consistent. She even has one or two skills at the 20-23 month level! I have heard this is very typical for children with sensory issues.

Whitney’s fine motor skills are centering around 6-8 months. She is still not using her thumbs consistently to pick up objects, which is a 3-5 month old skill. Her pincer grasp is just now starting to develop, and that is not consistent either. On a good note, Whitney has started to draw on her chalkboard spontaneously, a 12-15 month skill. Feeding issues are still a problem. She will rarely transfer food to her mouth with her hand, and rarely uses a spoon. Some of this is will, some is sensory defensiveness, and some is lack of ability to use her thumbs.

Whitney's challenges in fine motor, and some in gross motor, are exacerbated by her sensory defensiveness. Whitney will fight putting her feet on the ground, limiting her time to practice standing. She does not want to touch wet substances except water. It needs to be a focus of her play right now. I guess we need to stock up on shaving cream and pudding!

Whitney’s expressive language is around 7-10 months. Her low tone has contributed to her speech issues. We are using pictures to communicate with Whitney. This has really opened her ability to communicate. She now can express choices to us.

We just got back from the Pediatric Neurologist. In the three months since our last visit, Whitney has made progress. She has learned to crawl in those three months. Since some of her skills are now a year behind or more, we are moving forward to do more chromosome testing. We did a blood test today for subtelomeric FISH (fluorescence in situ hybridization), a high resolution chromosome analysis. This test will detect small structural chromosome abnormalities not detected in our last round of testing.

http://www.ggc.org/Diagnostics/Cytogenetics/fish.htm

Whitney was very brave during her blood test. More brave than Mommy.

21 months: Whitney's Physical Therapist just had a baby and we got a new therapist. She wanted to make sure her more needy cases got a therapist while she was on maternity leave. This one has an interesting background of study. Our old PT was really pushing WWW to walk, but she has not yet pulled up. This therapist is about reaching appropriate milestones in order.....crawling, pulling up, cruising, walking. I really liked that point of view. She kept saying that whitney's crawling is her own therapy sessions. That was cool....therapy does not always involve tears and screaming! I may see if we can stay with this new therapist. We will see in a couple of weeks.

We all had the flu about 2 weeks ago. Whitney slid back a bid due to that. She is having standing trouble again. We will catch back up.

Speech Therapy is really great. She LOVES her therapist. We have taken pictures of all the things in WWW's environment...toys, foods...and use those pictures to communicate. WWW really gets the idea. If we show her the doll picture, she touches the doll. We combine that with the sign for doll to reinforce different abilities to communicate. She is using more vocalization to communicate. I finally have a name...mam. Of course her favorite word is "no"...nah, nah, nah.

We go back to the Neurologist next month on the 13th. She has had a lot of progress, but he did indicate he wanted to see her walking. We are several months away from that. I would really LOVE to know what is going on with her. Knowing is always better.

We really have had amazing progress lately. Whitney is crawling everywhere. We are actually having to baby-proof the house, finally. She has discovered the laundry room and the dog food we keep there. Yum. Looks like cheerios. We have all seen her pick up cheerios with her fingers instead of her whole hand. John, our sitter, has seen her eat them too.

She has started to stand at a table, holding on lightly to a toy or the table. We took pictures of that! We started putting sturdy shoes on her. It really seems to steady her. Her trunk is getting much thicker as her muscles develop. It is really helping to steady her when crawling and standing. I really think we will meet my personal goal of having her walking by her 2nd birthday in July.

Her ability to communicate is getting better. She hs learned to imitate our movements, like hugging a doll. This has helped with her speech. She now says Bye-Bye and waves with both hands. Gosh it is cute. She seems to be picking up the concept of sign language having real meaning. She has been saying "finished" and "eat" in sign for a long time, and has done a few groupings of those signs. But now, when I sign, she tries to follow my hand movements. She signed "shoes off" after I said "shoes off" in speech and sign.

Here are her speech therapy evaluation results. I found them interesting.

Receptive Language: 15-18 months
Expressive Language: 7-10 months

Summary: The Nonspeech test was used because this was a test developed to measure language abilities in children who are nonverbal due to motor difficulties. The testing was done over a period of time so Whitney could be observed during different activities. She has been diagnosed with motor incoordination and low muscle tone. These have severely impacted Whitney's ability to develop typical communication skills. Whitney has developed eye gazing, differential cries and body postures to communicate with her family. Whitney was not able to imitate facial expressions or sounds, but was able to eye gaze and/or lean toward a desired object. A brief oral motor screen revealed low tone to the cheeks and tongue with limited movement of the tongue.

Recommendations: Speech therapy 1x per week to establish a communication system and for sensory oral motor activities.

You know, with no diagnosis, I am so needful of a reason why Whitney is so delayed, so weak. Someone at therapy last week said she presents like an early cerebral palsy child. Wow. That really stung. I know we tested for that alreay, so that can be eliminated, but what the heck is going on? I found "Angelman Syndrom" on the web. Really sounds like her symptoms, but don't they all?

Whitney crawled across the living room without falling tonight. What a feeling. The little advances mean so much. She seems to be getting stronger in the trunk. I think the Kinesio tape is working well. We can hold her thighs and she is able to hold up her trunk. She has even started to put her hands down at her sides instead of up at her face when she is standing.

I am noticing a jump in receptive speech too. She is following directions much better than last month. She will put her hands down when asked, without physically prompting her. She has started to put her legs flat on the floor when asked also, but still needs encouragement on that one. The speech eval should be finished Monday and normal therapy should start. There apprears to be about a 3-4 month difference in receptive and expressive speech. She is doing combinations of signs she knows...like "Finished" "sleep". She gets the point across.

19 months: We met with the neurologist. Every test came back negative. He wants to wait 3 months and see where therapy gets her. If she does not have substantial improvement, he will do individual chromosome analysis.

She seems much more active this week. She is starting to climb on us and slightly elevated objects. We started Kinesio Taping her hands and abdomen. This stretchy tape reminds her to open her hand or contract her abdomen. I saw a difference in her stance immediately. Hope we see some improvement.

I went to group OT with Whitney because her sitter did not show up to take her. I was quite impressed. She got a lot of attention because she was the youngest one there. They had play time, snack time, gym time, craft time, and music time. Whitney was able to participate in a lot. Now I know where she has picked up some new signs and games.

She kept putting her hand over her face during group. I didn't catch it for a LONG time; I can be dense. She was saying she was sleepy, a sign we have been working on for a long time. As soon as I recognized it and verbalized her need, she stopped being fussy and joined in the rest of the time, although she was very sleepy.

They had a mirror song where they held a mirror up to each child, then had them hit a big button that said "good morning to you". They came around to Whitney, she LOVED the mirror, then hit the big button just like everyone else. I almost cried. It was very emotional.

We finally got speech therapy set up. Dr sending a prescription for the evaluation to my OT office, but we have scheduled one session of speech per week, with the therapist being a consultant for working with her other therapists on speech and oral issues.

EI teacher said Whitney measures at 12 months cognatively right now.

Our FSC said their guidelines for funding limit whitney to 5 sessions a week. We are now up to 5. I'm wondering about that "guideline" and will need to research it a bit. I now see why our FSC has been hesitating so much. It's all about money.

Made the followup appointment with our Neurologist now that all of WWW's tests are finally finished.

FINALLY, we have a meeting set up to discuss speech therapy. We go tomorrow to meet with our team of therapists. OT said she is not sure the cognative results of our eval were correct. She thinks whitney is more developed cognatively.

Whitney started clapping this week. She really likes the sound, but gets frustrated when she misses. Today she picked up her sippy cup and drank out of it herself. WOW.

Strange thing happened today cognitively. We were watching Star Trek, TNG, and Riker walked onto the screen. Whitney said "DADA!". I barely noticed, but then he walked off and back on again. She said "DADA!" I looked at the screen and at my husband...dark wavy hair, beard, burgundy shirt, dark pants...wow. She had totally made the connection that the person on TV LOOKED like daddy! As daddy was holding her hands at the time, I'm not sure if she thought it WAS daddy or just looked like him, but how cool was that?

Lab called about the urine sample...they forgot to freeze it and we need to do it again. OH MY. Here we go again.

18 months: Well, have you EVER tried to get a urine sample from a little girl in diapers? After a week of trying, we finally got the sample today. Yea! This is the end of this first round of tests.

Called about getting her speech again and discussed with her OT. She thinks we should be getting it too. Said to get a prescription from the Dr, but I'm pretty sure it's not covered by our insurance. Time for research.

We took Whitney off milk. I think we are seeing a difference. She is "talking" more. Definately says "no" when she means no, and calls me mama when she is looking for me. She had a milk product last night by accident and today she is a little funny...more flinging her head, more hand waving. I think there is a connection.

18 Months: Finally get in to see the neurologist. Sent us for an MRI and blood tests. Whitney has not had a needle before as we chose not to vaccinate. It was rough on me. I had to hold her down while they drew blood. She was surprised at first and didn't cry, but they could not get blood from the first arm and had to stick her again. Rough, rough, rough.

The MRI was ok. We arrived with her very tired and hungry. The sedative took effect in less than 5 minutes. She did NOT like that medicine at all. We got to sit in the room while she got the MRI. She was pretty sedated and only moved once. It was quite a loud and startling procedure. The Dr on site said he saw no immediate problems with her brain from the scans. He has to look closer, but will get a report to the neurologist tomorrow.

She finally crawled yesterday. Took about 4 tentative crawl "steps". Oh how that will open her world.

Her thumbs are coming out of hiding and a pincher grasp is starting to develop. We massage her thumbs constantly. Poor girl...we never leave her alone. I feel like everything is therapy. We brush her, massage her, do joint compressions, you name it....

I have called Child and Families to find out about Oral therapy. Boy they move slow.