Look Ma, no hands!

That is Randy on the swing in gymnastics.  It was the first time that the little ones have used it.  There were three kids in class that day.  The little girls in the glass seemed to like it a little, but Randy LOVED the swing.  He had this huge belly laugh and cried when he had to get off (she gave him a second turn).

Randy has been in gymnastics since August.  It has been a great addition to his therapies.  We are in the Mom n' Tots class; it starts at 15 months.  There is a 2/3 class and a 4/5 class.  We started in this class because he was not walking in August.  The first couple of classes consisted of me dragging him from station to station and putting him through all the paces.  His teacher and I talked about moving him up.  We both agree that maturity wise he is ready.  He is able to follow directions and take turns much better than his classmates; but he is also 6-12 months older than they are.  Physically though, he is still behind these much younger peers.  The coach and I plan to move him up when he turns 3.  She will be moving some of her older girls in the 2/3 class and thinks that he will do great.  There are two instructors in the class. I am so proud of him.

Long overdue update

I have not posted a real update about Randy in quite a while.  It is long overdue.

Developmental Toddler program:
Randy started "pre-school" August 24th.  He attends Monday-Thursday for 2.5 hours a day.  He rides the bus to and from daycare.  Two of his "friends" from daycare also attend (they both ride the bus), but are not in his class.  I visited the school last spring and was fortunate to get the exact class that I wanted (without even asking).  There are 7 kids (all special needs), 1 teacher, and 1.5 para's (one is a floater).  Some of the kids attend two days a week and the others attend 4 days per week.  The number of days is dependent on their needs.  So the kids in the class range from those with mild speech delays or mild OT delays (2 days per week) to children wheelchair bound and non verbal.  Randy began the year as one of two children not walking.  Randy has group PT, OT and speech each week and the vision teacher works with him individually or in conjunction with another therapist (this week she saw him with the PT to work on mobility).

Daycare:
Randy is soooo happy to be back at daycare.  He has been dubbed the "class leader" by his teachers and the therapists.  He is one of the older kids in the class.  He is certainly the most verbal and is resisting being a big boy in class at times.  He can now say all the teachers names still greets every person there.  He is going to be featured in their annual report this year.  I will scan his article when I get it.

Therapy:
PT-Randy is WALKING!!!! He has been independently walking for 3 weeks.  He has been so close for months.  He just decided that he did not need any help and just stood and walked.  He has improved so much in 3 short weeks.  He can now stand (without moving).  He can turn around without getting on his knees.  His therapist has already began working on stairs and have given him a new goal of walking backwards.

OT-He is only being checked until we get new visits next year.  His OT is also his feeding therapist, so she just "checks" with him occasionally.  He gets lots of fine motor work in daycare and in pre-school.

Feeding-Still the bane of my existence.  His therapists says he's making great progress.  I am having a hard time seeing it.  It just feels so slow.  He now eats cereal bars and is eating thicker purees.  I make a batch of "baby food" every weekend and freeze it in small containers.  I have to send it to daycare or he would starve.

Speech-His speech therapist is on maternity leave.  I opted to put his therapy on hold since she is only out 6 weeks and he's in daycare and pre-school.  I am working on getting him to tell me about his day.  I ask him about things I know and prompt him to give me a response.  I'll say, "What did you do today?" He'll say, "Mmmmmm I don't know." I'll ask, "Did you ride the bus?"  He'll say, "Yes."  I'll tell him to say, "I rode the bus."  He won't say anything.  I figure at some point he will start to respond.

Gymnastics & swimming:
Both of these are Mommy & Me.  Mommy is getting quite the workout. LOL.  He loves gymnastics and likes swimming.  In gymnastics I lift him through all these circuits.  He has gone three weeks and I see and improvement.  He will now step up onto the balance beam (week one he screamed when I put his foot on it).  He goes through the tunnel (she switched the navy blue tunnel to a lime green one and now he loves it).  He will allow me to move him through a forward roll.  Although he is not helping at all, at least he is not arching his back and flailing his arms like week one.  Swimming is only OK.  He likes to be able to splash around and play in the water and this lady girl has us doing stuff like rescue breathing and showing us the fire exits.  My baby just wants to swim.

Eyes:
Patching has decreased from 4 hours per day to 2-2.5 hours five days per week.  His eyes look great!  He will probably have surgery next summer to straighten them more.

2009

2010

Doctor appointments:
They have really slowed down this third year of life.  He sees his pediatrician on Tuesday for a well check.  Is there a 2.5 year well check?  My friends daughter went at two and does not go back until age three.  He sees neurosurgery yearly now.  His next appointment with and MRI is June 2011.  He sees the ENT yearly with a hearing exam.  That appointment is May 2011.  The feeding team appointment is next month.  I am going to discuss discontinuing these appointments.  His growth is great and his reflux is controlled.  I will just see his pediatrician for his reflux and allow the CP clinic to chart his growth and nutrition.  We'll see.  His next CP appointment is in January 2011; he sees them every 3-6 months.  He still sees his eye doctor every three months.  These appointments are a piece a cake compared to the monthly appointments with almost all these specialists that he had at one point.

This is a really good time for us right now.  I have the days when I'm super stressed out over feeding or when I begin to worry about his IEP that is just around the corner; but overall, things are good.

Recent Physical Therapy Re-Evaluation

Dated: June 7, 2010

Long Term Goals
Randy will ambulate 20' independently using a normal base of support without loss of balance - not achieved
Randy will be in the 25th percentile for gross motor as assessed by the Peabody - not achieved
Randy will walk up and down 4 steps with 1 hand rail and step to gait - not initiated
Randy will step backwards for 5 feet with or without pulling object 3/5 attempts - not initiated
Randy will kick a ball in standing without loss of balance 3/5 attempts - not initiated

Short term goals
Randy will be independent in getting in and out of walker 4/5 attempts - achieved
Randy will ambulates in a walker of push toy for 50' and around corners independently 2/3 attempts - achieved
Randy will stand independently for 1 minute 3/5 attempts - partially achieved
Randy will throw a ball in standing with minimal loss of balance - not achieved
Randy will move from sitting on the floor to standing independently 2/5 attempts - not achieved

His current Peabody z-score is -1.88 which is an improvement over 6 months ago.  Individual scores:
Stationary - 18 months, 37th percentile
Locomotion - 13 months, 1st percentile

Object manipulation - 12 months, 2nd percentile

Speech Evalution, PT, and Feeding

Warning: This is going to be a long post.

Speech Evaluation: Randy finally received the speech evaluation that was ordered by his pediatrician in October. I think that initially the scheduler forgot, then he was out for surgery. This is the second evaluation he has received. The first on was in late March. The ST suggested that we wait for speech and concentrate his therapy time on PT and OT and feeding (he does feeding with his OT). Well I am anxious to get his speech started because his OT is pregnant with twins and is high risk. She has already sent Randy to someone else for his developmental therapy due to lifting restrictions, so I wanted his speech therapist to be able to step in with his feeding if she was suddenly put on bed rest (I know that can happen in the blink of an eye).

Although Randy does not have a lot of words, I realize that he communicates with us pretty well. If he wants to play, he grabs your hands and starts to clap. If he is hungry, he has this shrill kind of whiny cry that is very distinctive. He can ask you to pick him up. And he certainly has the words "all done" and "bye-bye" perfected. He speaks this gibberish, but I know in his mind he is truly trying to communicate. He uses inflection and different tones of voice depending on what he is trying to say. I think he just truly cannot make certain sounds.

He certainly understands most of what you tell him. Amy, the ST, asked me if he would retrieve items upon request. I told her know. Well, later that week, I thought about I would see if he would retrieve something. I was sorting clothes in the hallway and asked him to go get me a toy. He quickly crawled away and came back with this:

I was so impressed with my baby. I think he does not retrieve items because we do not ask him to. It is amazing the things we naturally don't do with children if they have a motor delay. I'm sure I would have asked him to give me something a million times if he were walking.

The report states that average ability scores fall within a range 90-110. Randy's scores were:

Receptive Language 87/19 (ability score/percentile rank)

Expressive Language 97/42 (ability score/percentile rank)

She is recommending therapy once per week.

Physical therapy: Randy gets all his therapies while he is at daycare. That is actually the main reason he started daycare this year. The upside is that they can adjust his schedule if the therapist will be off on his regular day or any other conflict. The down side is that I do not attend therapy with him. So when I am off work, I try to attend. They changed his regular Friday session to Monday due to the holiday.

Randy is officially crawling on all fours, and almost never belly crawls anymore. Bobbie, his PT, is working on him pulling to stand, cruising, and bearing weight for longer periods of time. Well while she is working with him, he is being the little stinker that he can be at times. He is rolling around when she wants him to stand or buckling his legs. She then starts to tell me how he has been very uncooperative since he returned from surgery and that his lack of cooperation is going to impede his progress. She says that the classroom teachers are having problems with his behavior and that he is biting other children. I am pissed!!!! I'm not mad because she is telling me these things, but I am mad that she is saying something instead of the classroom teachers. I am mad because I have emailed her on several occasions telling her how I want and need feedback from his sessions. And then she hits me with this!! Like she's at the end of her rope! Like this is some huge problem that needs to be addressed ASAP! Why didn't she email or call me when it was a small problem??

So I tell her that I had no idea that things were this bad and that I have been voicing my concerns with feeling disconnected from his therapy since he started daycare. I ask her what can I do to help improve this problem. She says that we need to all be consistent in what we do when he misbehaves or resists. Then the light bulb goes off.... She thinks that we spoil him at home and at the sitters. All the while she keeps giving me this look like "see what I mean" every time he resists or whines or has a meltdown. I tell her we will work on it. She tells me she will ask the coordinator to look at her schedule and try to schedule him late afternoon on one of the days he attends daycare so that I can attend a little more regularly.

Somewhere in the midst of the therapy and drama, I ask her about Randy's future mobility. Age 2 is about the time that mobility and being upright with your peer group becomes more important. The PT feels very confident that Randy can/will walk. She says she is not eager to jump into a lot of assistive equipment the moment he turns two. She is eager to see what the orthopedist recommends in January when he goes to the CP clinic. She says that she will start to put him in a Kaye walker to help him practice the movement of walking. The thought of a chair is not in her mind and I am OK with that.

Kaye Walker

Feeding: Again, because I am off for two weeks I wanted to attend feeding therapy. I planned to attend twice, but had to cancel because Randy was really sick last Tuesday. I have written several times about Randy's difficulty with eating. He really has only a couple of table foods and yogurt and purees. He is growing on his current diet.

I think the PT and the feeding OT have been talking to one another. She said that Randy does not like to be challenged. She said that a lot of that was due to his age. We talked about how much progress he'd made this summer and attributed a lot of this to the fact that I was basically the only one feeding him. We talked about his schedule at school and the adaptations he has to make between the days he's in daycare and the days he is at the sitter and the weekends. She says that consistency is going to be key to his progress. That's when the second light bulb went off.

While we were talking, she fed him some beans. He gave her resistance, but did not cry like he does with me. His feeding therapist has been able to get him to eat things I never could. But, I was surprised to see the small amounts they were considering eating. These definitely do not constitute a meal. I learned how to stretch his cheeks in addition to using the NUK brush. She also suggested buying an electric toothbrush.

So, I have a lot to process about the therapies and what I am going to need to put in place for Randy's continued progress and how I am going to need others to support these goals.

Randy's suspension has been lifted

Randy was suspended from daycare. Not by the daycare; but by the doctor. The neurosurgeon did not want him in daycare after his surgery for fear of infection. He was released to go last week, but the director and I agreed on this week because of the holiday last week.

Randy was beyond excited to go back to daycare. Now he loves his sitter, but I think he likes all the toys at the daycare and the other kids. He began squealing when I pulled into the drop off/pick up area. He was saying ma-ma, da-da, and bye-bye. He almost jumped out of my arms as I was carrying him down the hall way.

The OT emailed me yesterday to talk about his feeding. I told her about all the issues I was having. Well guess what the stinker did? He ate orange and toast for her!! Now he would not eat lunch for the classroom teacher; they had to give him baby food. Am I going to have to go back to school to study occupational therapy in order to get my son to eat table food?

Randy shared his new skill with them; I haven't shared it with you guys. Randy can crawl on all fours!!!! He is crawling on knees about 60% of the time. He is so tickled with himself and I am so proud of him.

18 month checkup

So much has happened this week and I did not have any Internet since Monday night. I think the wind damaged some lines. The cable guy spent three hours at our house Saturday, so we are now connected!


Before I post about this subject, I want to say that I love his pediatrician!


Randy had his 18 month check up on Tuesday. I had a long list of things I wanted to discuss. Some of the topics were: growth, bottle, therapies, infections, allergies, and about a half dozen more. The visit started off a little frantic. It was packed in the lobby with all these kids and adults wearing masks. The medical assistant was actually one of the office managers. She smelled like cigarette smoke and did not know what she is doing. The old medical assistant was dry as week old toast, but she was competent.


Anyhoo, the pediatrician looked in his ears and said, "He has an ear infection." If you remember, I had just taken him on Friday and his ears were fine. He had an infection in both ears. He was given another antibiotic (a different kind) and was told to stop using the drops. Randy has an appointment in late November with the ENT doctor, but his ped wants me to schedule it sooner. I think he is finally as sick of these infections as I am.


He then read my list and began talking about all the things on my list as he examined his the rest of him.


Did I say that I love his pediatrician?!


He thinks that aqua therapy is a great idea once the ear infections are under control. We will look into hippo therapy at his two year appointment. He wants him to be re-evaluated for speech (the therapist suggested this in March after his last evaluation). He suggested that I apply for a handicap sticker. Although he anticipates Randy walking, how soon is still to be seen. He is still in favor of daycare despite Randy being sick.


We talked about allergies contributing to the cold symptoms and thus ear infections. He said it is possible, but not completely sure. He said that we will be able to tell a little if he gets better after ragweed season. I told him that we had an appointment for Monday. He was OK with us pursuing this avenue.


I love his pediatrician!


He was all for Randy continuing with his bottle. He says that he needs the calories and he would never drink the same amount from a cup (not that he drinks a lot right now). Randy did not gain much over the last three months, and nothing over that last two months. His stats were:

Weight: 20 lbs 4 oz

Length: almost 31 inches

Head circumference: 44.2 centimeters

He is on the curve for height, but at the lower end. He is not on the chart for weight on head circumference.


Finally, he diagnosed Randy with cerebral palsy. "Cerebral palsy is a group of disorders involving movement, learning, hearing, seeing, and thinking that occur due to problems with brain development and/or injury." Cerebral palsy does not get better or worse. Randy suffered injury with his brain bleeds that occurred due to his early birth. I have only told a few people and the first thing they have done is get really silent and if we were not on the phone they would have had their mouths hanging open. LOL.


I really took the diagnosis well. My ped had talked to me at the 15 month appointment. He was preparing me. I think he would have put off the diagnosis until the 2 year appointment, but I kind of pushed the envelope with my questions. I asked what symptoms Randy was showing that would lead to the diagnosis, etc... I finally asked, "Are you on the fence as to whether Randy has cerebral palsy?" He said, "No." Then I said, "Diagnosis it now then."


Many may be wondering why I would want this diagnosis for my son? I don't want my son to have cerebral palsy. I did not want him born three months early? I don't want him to have hydrocephalus. I don't want him to have a shunt. But my wanting or not wanting does not change reality. It is what it is.


Some of you may wonder how my doctor could delay such a diagnosis? It's because we are not doing anything different now that he has cerebral palsy than we would have done without the diagnosis. He will still get PT, OT, feeding, and speech. I will still work with him at home. Nothing changes.


Then what is the purpose of the diagnosis? I'm not totally sure. I do know that it lets the insurance company know that these issues are not going away. Maybe it gives us a leg to stand on when we are asking for money for therapies and/or equipment.


All I know is that my little boy was the same when we left as when he arrived. That is what is important to me.

Look what I found this morning

when I went into Randy's room.
I'm not talking about him covering his face (he was actually crying because I took too long to get to him); I am talking about the fact that he is sitting up! He went from laying to sitting all by himself.

I have not witnessed him doing this by himself yet, but we have been working on it so hard in therapy and practicing at home. Maybe the Kinesio (sp?) tape helped.

His PT taped his tummy. She said this would keep the muscle in place and help build strength. He really did not mind it much; I just had to keep a onsie on him so he wouldn't take it off. I'll have to let her know what he did on Monday and maybe she will tape him again.

Randy and Grammy at physical therapy

I had the great pleasure and honor to take Randy to have his p. t. on two Mondays. He is such a good boy but I did see his patience pushed to the limit. He also likes to do things his own way. Randy moves to his left side very well. His therapist is working with him to use his right side also. She tells him unless he starts to use his right side as well he will continue to go in circles. She uses different toys to attract his attention and she lets him move to the left then when she wants him to move to the right she gently assists him. She also helped him stretch his muscles on the right side. She is very good with him. He responds to her very well. That is until she had him on his knees. The first week we went he screamed bloody murder when she had him on his knees. He did not like it at all. This week he seemed not to mind it quite as much. She was pleased with the progress he is making and tells him he is doing a "good job." At the end of his session this week she let him roll over until he was right by me. He lifted his arms and we left.

How you doing?

Randy seems to be growing up so quickly all of a sudden. He's getting really long. He's moving about more and more. He loves to roll back and forth, and then laugh as if he's done some amazing feat that you can't do. He has decided that he wants to sleep on his stomach since he has his new found mobility.

Randy has also decided that big boys don't drink bottles. It is a daily battle to get him to take his bottle. Most people say, "Well take him off of it". But right now I can't. He's still on formula, and the doctors would like for him to get 20-24 ounces per day. He does not do well with the sippy cup and can't drink from a straw. I can get a few sips into him by using an open cup, but it doesn't add up to much. The nurse from the feeding team thought maybe it was a taste issue and suggested putting vanilla or chocolate syrup in his milk for taste. He liked the new taste, but did not drink anymore. His appetite for food is still there; he just does not want the bottle.

Feeding therapy is going great otherwise. He is doing great at picking up the puffs. He struggles at times to see them on his tray. He is working on his pincer grasp and is getting them to his mouth about 50% of the time.

PT is going great also. We are spending a lot of time strengthening his trunk muscles. Although he sits up, he is still weak in his trunk. He seems to have better stamina, and does not tire as easily. I was very surprised to find out that his trunk is in control of so many actions.

OT kind of meshes with the feeding and PT. We are working on grasping and putting weight on his arms. Building up his arms and his trunk will allow him to move to the crawling stage. We also help him with his right actions. This will improve his balance.

Randy visited the developmental follow up clinic. This clinic is to follow up the NICU babies and monitor their development. I'm not sure how helpful it is to Randy. They test him on the same things that his OT and PT test him on, and ask me a whole bunch of questions. Then they ask me is he in therapy and Early Intervention. They say great and send us on our way. The only thing that keeps me going back is that I know all of this is data. And this data may help a micropreemie five years from now. I did ask her about cerebral palsy. Her response was that they do not make that determination until about 18 months of age unless it was VERY severe and obvious. She was pleased with the way his body moved, but could not give me a definitive answer. I take him back in 9 months. His data was:

Weight - 18 lbs 5 oz
Length - 29 1/4 inch
Head Circumference - 43 cm

Language - 8 months
Visual Motor - 7.2 months

Therapy, therapy, therapy

Long story about therapy.

Randy was let go by the company that did OT and PT in our home. This all happened about six weeks ago. They were having staffing issues. The original OT quit in November and was replaced with an OTA, and the original PT retired in February and was replaced with a PTA. The OTA quit, and they were unable to find anyone to take our case. I think we were low priority because Randy is not home bound, and I expected them to come on time or call.

Anyhoo, I was very upset. I called Children's hospital for an evaluation and services. I made this call on March 31st. They could not get him in for an evaluation until May 13th and told me there was a ONE YEAR waiting list for afternoon or evening appointments; but that I they could schedule me sooner if I wanted a 9a or 10a appointment. That sounds great for the SAHM or the moms that work second or third shift; but a large number of working moms work first shift.

So....I asked them about some other places and they gave me a couple of referrals. I took him to this place that is near my home. They are a center for children and adults with needs. They have a hearing center, therapy, respite care, and child care. They scheduled his evaluation within 3 weeks. The last evaluation was today. The scheduler will be calling me tomorrow to set up his appointments.

Speech: The speech pathologist asked me a lot of questions about his expressive and receptive language. His receptive language is higher than his expressive language. She was pleased with his babbling. I was surprised that his lack of mobility affects his speech. For example, she asked if he responded when we told him "no". We don't have to tell him no because he is not mobile. So we need to make sure we are using words with him all the time. She also looked at the way he took his bottle and ate (puffs). She noted his weak suck and the fact that he worked hard to eat. She liked his chew and said that he "laterilizes his tongue". She said that he could definitely qualify for speech, but gave me the option (almost suggested) that we wait 6 months and let the OT work on feeding. She felt that we were doing all the right things at home: talking to him, reading, giving words to his actions, etc...

OT: The occupational therapist was fabulous! She introduced herself and told me she has a masters degree in her field and specializes in patients with neurological issues and babies. YAY!!! She played with him and asked lots of questions. She had already spoken with the speech therapist and watched him eat too. She asked me to take off his shirt so that she could see the way his body moved. Now in all the months of home therapy he's had, they have never done this. She noted that his left side was higher than his right. She put his fine motor skills at 5-6 months, and his cognitive motor skills at 6-7 months. She suggested therapy 2x per week.

PT: The physical therapist had already talked to the OT, and we reviewed some of the things they had talked about. She took off all his clothes and examined his movements very thoroughly. She rotated his ankles, legs, hips, and torso. She noted that he definitely prefers his right side. She says he is definitely weak in his trunk, hips and ankles. Good news.....both the OT and PT said he has good range of motion and that they feel that his weakness is muscular skeletal and NOT neurological! That felt good to hear. I am praying that this means no CP in his future. She recommends therapy 1-2x per week.

So we will be busier soon. I'll keep you posted.