Medical Update

June has been quite a busy month.  Randy visited the allergist, neurosurgeon, speech therapist, as well as the ENT that I blogged about in the last post.

Allergist:  More of the same.  His pediatrician switched his nasal spray from Nasonex to Pantanase due to the chronic cough that was accompanying the stuffy and runny nose.  He told me to defer to the allergist to see if she was OK with the switch.  She seemed OK with it, but I think she was a little irritated that I did not come to see her for the switch.  She sent him to Children's to get a blood draw so that she could repeat his allergy screening.  She could not do the skin test because Pantanase is an antihistamine and will interfere with the test results.

Neurosurgeon:  He was very pleased with his progress.  He had him walk and talk and was pretty impressed with how many skills he'd gained in a year.  The MRI showed enlarged ventricles on one side.  The neurosurgeon is not sure if this is his "new norm" or if he is easing his way into a malfunction.  He was not very alarmed since his behavior and function were good, but he did not want to brush it off as nothing.  Randy gets a repeat MRI next month, one week before his ear tubes and adenoid surgery.

Speech Evaluation:  I took Randy to the local children's hospital for a speech evaluation.  He has not been in speech since August 2010 when his therapist at the therapy center went out to have a baby.  Personally, I was not impressed with his speech therapist.  She was nice, but I was not wowed by the sessions.  The therapist at children's was very thorough.  She had him name pictures and point to things.  She had him repeat words.  She stated that he performs much better than one would expect when they look at his history.  This is not the first time I've hear this.  I sometimes minimize the severity of a bi-lateral grade 3 bleed.  She will mail the report once it is scored, but she says that his expressive speech and articulation are not that severely behind.  His major weakness is his receptive speech.  This is not the first time I've heard this either.  She also mentioned his attention.  She says his attention span is shorter than to be expected.  I was a little shocked to hear this.  She said that he will be put on the waiting list (6-9 months).  She suggested that I try a different therapist at the therapy center we go to.

So, when I took him in for OT, I talked to her about the speech eval (they had already gotten the results) and she suggested a person that would be good for Randy.  I was honest with her about the previous therapist.  She was in no way offended and will be getting him set up (she is the case manager there as well).

Belated 1st Shuntiversay!

How could I have forgotten?  It has been a year (and a few days) since Randy's last shunt revision.  I am soooo happy and moved with emotion.  I have mixed feelings about the fact that I forgot.  I am happy that we are living life and not worrying about his health, but I don't ever want to forget to the point that I take his good health for granted.  I want to always remain grateful.

One year ago-Post Surgery

I really hope so....

Today my sister-in-law, Randy's godmother, asked me if Randy was done with having surgeries for a while.  I told her, "I hope so"; but truth is that I really do not know.  That is life with a shunt.  It could fail tonight or not for ten years or never again.  It's a piece of hardware. It's like a car, or a refrigerator, or a television.  It seems that some people can have these things 20 years and they never break (well not a car), and others own them for 6 months and they break all the time.

So Randy will always have to be aware of his shunt.  He'll have to pay attention to his body and be on the lookout for warning signs.  He can't take a bout of vomiting for granted.  He can't dismiss a recurring headache.  He can't brush off fatigue.

But I really hope he does not have surgery anytime soon.

Ear tubes

Sound familiar?  It should.  Randy had these put in July, 2009, and guess what?  They are not working anymore.  When he received the tubes, the doctor warned that he may have to get a second set.  But he said in 12-18 months, not 8 months later!

I have to be honest, I'm not so sure I want to have then done again.  His ENT is a wonderful man who spends lots of time explaining things and allowing me to vent.  He says that if Randy did not have other health issues, he would suggest that we "wait and see".  But since ear infections take such a huge toll on Randy, he suggests that we do the tubes.  He looked at Randy as a whole when making this reccomendation.  He talked about infection in relationship to his shunt and overall health.  He talked about ear infections and how it sets him back in feeding.  He does not want his ears to delay his speech any more than it already is.  He simply feels the risk of this simple surgery is worth the benefit.  I'm not so sure.

At any rate it is scheduled for April 26, 2010.

Update

I know that my latest posts have all been about this "cootie" that is attacking my son, so I thought I should update on how he is doing overall.

Randy really likes daycare. He is always happy to see Miss Kim when I drop him off in the mornings. He has four other babies in his class; he and another boy are 17 months; there is a 7 month old, a 10 month old, and a 2 year old. Randy and Michael will be moving to the toddler room soon. At daycare, they listen to nursery rhymes, go on stroller rides, and go to the gym to play. None of the babies are walking, but a couple of them are pulling up.

Playing with toys at daycare

Since being in daycare Randy has become really aggressive. He hits if you are taking things from him and he definitely has mastered the word "NO". He tells everyone bye-bye, and will say this to you if he wants you to leave him alone. He can clap his hands now and will start clapping them if he does something good. He also starts clapping them if you start singing.. "If you happy and you know it...." He is still army crawling and scooting on his bum to get around. He is finally tolerating a little weight bearing on his legs; but only for a few seconds.

He has been following up with the neurosurgeon's office since his shunt revision in June. There is an area that they are watching closely, the right temporal horn. It has been increasing since his revision. His last CT scan was Monday, and he has to get another one on October 1st. Let's pray that this area decreases slightly or stays stable. If not, Randy may be looking at a shunt revision.

His feeding has been slipping. For a while he was eating almost everything. Now he only wants a few meats: chicken nuggets, hot dogs, chicken breast, and MAYBE crumbled ground beef; no vegetables; no fruit; crackers; and dry cereal. He will still eat as much baby oatmeal and baby food that you can give him. I am not sure if this is because he has been battling the "cootie" or if he is being a picky toddler. I hope it is not a sensory thing. I want his eating to progress, not regress.

I am really tempted to give up the bottle. He is not interested in it very much. I just do not know how to get the volume of milk into him if I let go of the bottle. He only drinks about an ounce from the cup at a time. Who has the time to offer the cup every 30 minutes?

Lastly, he has a runny nose, cough, and fever again. He is finishing his antibiotic from the strep in his ear. The nurse says that this is probably viral instead of bacterial since he is currently on an antibiotic. Don't doctors always say it is viral?!

I have a runny nose, but can still clap my hands

I am hoping that his immune system strengthens for this upcoming winter. I hear that it is going to be bad with the flu.

Latest MRI results

The nurse from the neurosurgeons office returned my call yesterday. I wanted to know the results of Randy's MRI taken last Wednesday. He had to get a repeat scan because his scan from last month showed inlarged ventricles. The latest MRI showed the ventricles to be smaller.

I should back up. Randy has hydrocephalus. This resulted from grade III Interventricular Hemorrhaging (IVH) shortly after birth. They are more commonly called "brain bleeds". Well the bleeds caused the spinal fluid to collect in the ventricles in his brain; thus resulting in hydrocephalus. He has a shunt, and has had many revisions. You can get more detail when I post the other parts of "his story".

I am now waiting on the nurse to talk to the neurosurgeon to schedule our next appointment. Hopefully we can wait three months, and then move to a six month schedule. This nurse is new, so it seems that I have to explain everything to her.