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.

Eye/Vision Update

Randy had a follow up appointment with the ophthalmologist today. As usual, the orthoptist performed and eye exam. She shined lights in his eyes and watched his tracking. She asked me about his behavior while he was patched. I told her that his movements were more "infantile" while he was patched.

I brought DVD's of some of his MRI's and the ophthalmologist reviewed them. He wanted to see if he could get a good look at the optic nerve. Damage to this nerve can be an indication of his vision loss. When he entered I asked him what he saw. He said "Oh I could see the optic nerve some". I then asked if there was severe damage to it. He replied, "not severe". I finally had to ask him was he keeping something from me. I told him I can handle whatever it is. He assured me that he was telling me all he knew. He also said that the damage is not a direct indication as to the level of vision Randy will have. He said we will just have to keep treating him and we will have a better indication when he is older. I dropped the subject, but I still feel like he had speculations that he was not sharing with me.

As you can see from the pictures, his right eye wanders. This is a result if his strabismus. The bad part is that when it wanders, he is essentially "turning it off". If he turns it off long enough, he will essentially lose vision in this eye.

The patching forces him to use this wandering eye, thus preserving the vision in this eye. So he upped the patching time from 2 hours to 4 hours. I have to bring him back in 3 months for a full eye exam with dilation and everything. This is a 2-3 hour visit.

I did ask him about the future treatment plans for Randy's vision. He said we are patching now to save and maximize his vision. When he is older, we will pursue eye muscle surgery to straighten the eyes. He said this surgery is not as effective at such a young age. And since Randy has other neurological issues, his success rate with the surgery drops from 80% to 50%.

So right now I will continue patching.

Frustration, worry and good news!

I will start with the frustration because I love to end things on a good note. I patch Randy's eyes alternating each eye each day. Well the last few weeks has been a nightmare trying to keep the patch on. He did well at first; barely making a fuss except when it was time to take it off. Lately, he has taken off his patch several times a day; especially his right eye. The nurse at the office suggested putting socks on his hand when he pulled the patch off. Put the patch back on and take the socks off after a while. This would teach him a consequence for pulling off the patch. Well I tried it. He looked at the socks and put them in his mouth and smiled like "I like the way this feels". Then about ten minutes later, he took the patch off with the socks on his hand!!

Now the worry comes into play because he takes the patch off and puts it in his mouth. I was taking a bath (instead of a shower so I could hear him) and put him in his crib with toys. I left the bathroom door open (I know, but what's a mom to do?). It got too quiet so I jumped out the tub and walk in his room to find the patch off his eye and in his mouth. He could easily choke on this. I am at my wits end. I will have to stare at him for four hours straight so that he can get his patching time.

Now the good news. Randy rolled from stomach to back!!!!!!! This is huge. The therapist and I think that once he masters this, he will take off. He has been rolling from back to stomach for about 4-5 months. Once he started sitting up in February, it seems like he hit a wall. He has not hit anymore milestones since then.

I will include video clip as soon as my daughter gets home with her camera.

I'm taking suggestions for the patching dilemma.

Vision therapy and new specialist

We have the pleasure (smirk) of adding another specialist to Randy's list; ENT (ear, nose, and throat). This referral came from his failed hearing exam. They want to find the cause of the supposed hearing loss. I am still not convinced there is hearing loss, but I'm not sure enough not to follow through with the referral. I do believe he has some fluid that may be building up behind his ear. This could account for the stuffiness that he has at times, and the breathlessness he presents when he is drinking his bottle.

The vision specialist came to work with him today. She says that she sees improvement in him since she assessed him last month. It's kind of cool that she works with him because she is also visually impaired. She puts toys to his face and different black and white photos. She says that these help strengthen his eyes. She made me feel good because she said she could tell that I was patching him faithfully. I'm not one that needs a cheerleader often, but I really needed to hear that. I have been feeling like I'm not doing enough to help him progress.

He seems to have hit a wall with his physical development. He is still sitting and rolling from belly to back, but not much else. He's been doing this for almost two months now. The vision therapy believes it is related to his vision. She is going to get a book for me that deals with movement in the visually impaired. She is also going to work with the physical therapist from early intervention.

Speaking of early intervention; I must say that they have been wonderful!!! My specialist is always on time, bring me lots of goodies to work with Randy, and listens and acts on all my concerns. They come out 2-3 times per month; I wish it was weekly.

The last thing they did with Randy was vestibular motion. This is supposed to help him with righting reactions and trunk control. He LOVED it. He smiled and laughed. He even fussed when she stopped. They talked about getting a bowl that I can keep at home so that I can give him this motion regularly.