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.

I'm throwing in the towel

Well, sort of.  I am pulling back on feeding.  I am going to feed him, but I am not going to push so hard on him trying new food and/or textures.  I am not sure if it is the right thing, but I'm not sure if I can deal with this everyday.

This is how most meals looked when I was actively pushing textures and food.  He would cry; I would get frustrated.  He would be so angry and upset that he would not even eat his favorites after having the other foods pushed on him.  He would be so angry that he spent the rest of the evening crying and angry at me.  He was biting, hitting, and scratching.  He was not happy in the evenings.

Instead, I am going to begin pureeing again.  He will accept most foods if I puree them.  He'll eat chicken, roast, fish, and vegetables if I make them smooth.  I have been adding a little olive oil to make them smooth and to add a little healthy fat.

I'm also keeping him on the bottle.  I am going to encourage the cup use during the day, but I will still be giving him a morning and evening bottle of formula.  I can get him to drink 8-10 ounces this way.

This will not please some of his health care professionals.  His pediatrician and the feeding team are in my corner.  His feeding OT (who is out until June) and the CP clinic want me to push him.

I'm not ready.  And I'm ok with not being ready.  So until then, this is what he'll be doing

Need some feeding advice

I am beyond frustrated in the area of Randy's feeding. Let me preface my complaining (I mean concerns) with the fact that he is getting a decent amount of calories and he is growing and gaining weight. Right now he is 31 inches long and weighs 22 lbs. This puts him in the 1oth percentile for length, but still not on the chart for weight (he's getting awfully close though). Randy needs about 1,000 calories per day. He usually hits this mark through a little planning on my part. He gets two bowls of baby oatmeal that I calorie pack with his formula and prunes; this is 300 calories. He drinks 10-15 ounces of formula per day which is 300-400 calories. He eats one container of YoSoy yogurt which is 100 calories. That only leaves about 200-300 calories left which he gets in the form of baby food, crackers, dry cheerios, chicken nugget, or a sample of some pureed table food I may be able to coerce him into eating.

So what's the problem? Well my son is 20 month (OK, 17 months adjusted) and all of those foods look like they belong to a 9-10 month old. His veggies and fruit are 100% baby food. Chicken nuggets are the only meat he will eat (and MAYBE popcorn shrimp). They have to be certain chicken nuggets too; the outside must be crispy. Fortunately he gets some protein through his formula and he looooves the YoSoy yogurt. He could do a commercial. Once I left it in his bag at my mom's when I left him there and he was digging in his bag and found it. My mom said that he picked it up and held it out and started kicking his feet in excitement.

But I digress..... Another thing that bothers me is that his eating is regressing instead of progressing. In early July he had a list of foods that he would eat such as: hot dogs, sausage, green beans, baked beans, black beans, baked fish, avocado, mashed (with a fork) regular and sweet potato, and steamed carrots. Today he will not touch any of those foods.

He is in feeding therapy. He started in April and had it weekly until June. Then he moved to every two weeks, then as needed (about once a month). I noticed that he was slowly dropping foods. It started around the time he started daycare and began that dreaded cold/virus thing that took up residence. His OT attributed it to him being sick and said to just continue to offer foods and use his NUK brush. He started resisting the NUK brush and dropping foods. In late September/early October the OT began seeing him weekly again. She said that he was retracting his tongue again and his oral skills had declined. BTW, did you know that the ability to eat has nothing to do with the number of teeth you have? Randy has almost a full set and does not eat well.

But I digress again.... He has missed three weeks of feeding therapy since his surgery. He goes back to daycare this week and will resume his therapies (he has gained some other skill since being out of therapy but I will save that for another post). I am going to beg her to give me some more techniques. What I am doing is obviously not working. And the worst part is that he seems so depressed when I am feeding him (unless it's yogurt). He puts his thumb in his mouth (he does not suck his thumb), he leans his head to the side, his eyes gets glassy, and he cries. I am usually the only one who gets this behavior because if he is at the sitters or my mom's or with a friend, I try to give them food he loves. I feel like they should not have to deal with that and I don't want to make him more difficult to babysit than he already is. My hubby and daughter usually pick something easy too when they feed him. I am usually the one trying to get him to eat mashed table foods or a thicker puree.

I am at a loss. I need suggestions beyond "he'll eat when he gets hungry". Any ideas?

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.

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.