Thursday, December 15, 2011


Randy wears glasses now. I ordered two pairs; a main pair and a backup. The main pair were ordered November 23rd from a optical shop. They have the bendy handles that loop behind the ear. They are not in. I ordered the backup pair on December 3rd from Walmart; they were ready Monday.

Randy has done a great job keeping them on. His opthamologist hopes that his eyes will work together better with the glasses. This should result in better visual function.

Friday, October 21, 2011

There's more than one way to skin a cat!

My five followers may remember mentioning that Randy was diagnosed with failure to thrive in late 2008. Although my rational mind knows that it was due to his numerous hospitalizations and shunt surgeries, there's something very painful in hearing that your child is not thriving due to adequate nutrition. As a mother, it cut like a knife. That was also the beginning of our feeding woes.

Randy went back on NG feeds, but for overnight only. He would pull the tube out a few times a week. He would gag and choke in the middle of the night. He would vomit constantly. But he gained weight and length and the doctors were happy.

April 2009, his pediatrician was concerned that he was only taking stage 2 purees. He sent him to feeding therapy. We worked on desensitizing his hands and mouth. We used techniques to help him tolerate textures. He responded well. In July 2009, he was eating chicken drummette, baked fish, chicken nuggets, soft green beans, soft carrots, crackers, dry cereal along with his purees. Then I went back to work, he went back to daycare and went back to eating baby food.

Feeding is still a battle today. While he eats plenty of foods, they fall into three categories: soft: bread, chicken nuggets, macdonals fries; purée: applesauce, stage 2 Gerber (don't judge me); or crunchy: cereal, chips, crackers. Occasionally, I can coerce him to eat a few bites of spaghetti or beans.

He ate about 1/3 of that dish. But he's growing. I just don't know how nutritionally sound his diet is.

So I'm trying another tactic. I am going to start baking. I'm starting with muffins. I'm putting things like flaxseed, purée squash and carrot, and wheat germ in them. I welcome recipes. Remember his egg white and milk allergy (he can tolerate small amounts in cooked food).

Help me out.

Monday, October 10, 2011

I have an I Phone!!

Random pictures. I can post and add pics from my phone. Yay me!

Wednesday, September 14, 2011

Tuesday, August 2, 2011

Operation ditch paci

This is night one. I'm very nervous. Will update tomorrow. Almost time for bed.

Monday, July 25, 2011

Surgery comPlete

There we lots of fluid in his ear. Doctor said his adenoids were of "moderate" size. Without the chronic ear infections and congestion, he would not have taken them out. He says the adenoids being out should improve his ear infection.

I took pics, but can't upload them from my phone.

Sunday, July 24, 2011

Surgery tomorrow

Tomorrow Randy gets his third set of ear tubes and his adenoids removed. Although I feel very relaxed about the surgery, your extra prayers will be appreciated.

Wednesday, June 29, 2011

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).

Wednesday, June 8, 2011

Will the third time be the charm?

Randy will have PE tubes put in for the third time this summer!  The first time was in July 2009.  The second time was in April 2010.  The third (and hopefully final) time will be July 2011.  The ENT doctor said that 15% of children have to get tubes a second time, and 2% of them have to get them a third time.  Some odds.

He will also get his adenoids removed at the same time.  He had an x-ray of his tonsils, adenoids and sinuses in December.  This was ordered by the allergist.  She urged me to follow up with the ENT.  I made an appointment in February, but then went the wrong day.  I was too lazy to reschedule so I just brought the results to our regularly scheduled appointment today.  His tonsils are slightly enlarged, but not much.  His adenoids were pretty large.  This combined with his 5 ear infection and persistent fluid behind his ears, warranted them being removed.

Next week: speech evaluation, CT scan, and neurosurgeon.

Sunday, June 5, 2011

A Walk with Randy

Randy and I took a lovely walk this evening.  He pointed out the trees, grass, cars, and sticks.  I picked him up and he got to "hang" on a tree branch.  He said "Hi" to everyone we passed.  It was really a great walk.

But I was reminded of the fact that my son has some significant vision issues.  Most people do not realize it, or the ones that know forget.  Heck, I forget sometimes too.  But today I was reminded.

While we were walking, Randy would not notice changes in concrete height.  You know what I'm talking about?  You know how the sidewalk "lifts" and is higher sometimes?  Well Randy tripped right through those unless I stopped him and said "small step".  He simply could not see them.  He also stopped and "stepped" whenever the concrete was a different color.  He would say "big step" and lift his leg high to step although the concrete was level.

It just reminds me that although he is walking much better and seems to do OK, I must remember to monitor him closely outside and in unfamiliar places.  I need to remind others to do the same.  He has already fallen three times this spring and bruised his knees pretty bad.
The knee on the left has fresh wounds that you cannot see.  I'm tempted to put on some knee pads, but I do not want to make him feel like a baby (he is starting to push me away when other kids his age are around).

I hope that orientation and mobility can help him learn how to navigate his environment a little more safely.  Until then he has a long summer ahead.

Monday, May 30, 2011

No News is Good News

I guess that is where we are right now.  A lot is going on, but most of it seems to be moving in the right direction.  Randy continues to grow and is a smidgen over 36 inches and hovering around 29-30 pounds.  He is in the 25th-50th percentile.  Pretty impressive.  His gross motor skills are continually improving.  He still cannot run or jump, but he is making progress.  He practices "jumping" all the time and will run whenever given the opportunity.  He's been up on his tip toes a lot.  I thought it was because he is trying to move in a more sophisticated manner and used his toes for balance. His PT says that his hips are a little tighter.  She attributes this to his recent growth spurt.  She has reminded the classroom teachers to gently stretch him at diaper changes, and I need to be more diligent in stretching him at night.

He continues to need no patching.  He is also using his vision very well.  He is feeling more confident and taking more risks in his environment.  I worry about him navigating strange places, but I do not want to embarrass him.  For example: when we are at gymnastics, he wants to run and play with the other kids while we wait for class.  It is fine at first, but as we get closer to class the place gets busy and he struggles to see what's going on in his environment once it gets crowded.  When I call him back to me he says, "Mommy I play."

He weathered this last cold without an ear infection.  That is quite the accomplishment.  He is having some allergy issues.  He has been put on a second nasal spray.  He is also suffering from worsening rashes.  I think there is some other food allergy.  We have taken egg whites and milk away, and limit soy to a few times a week.  The pediatrician thinks it is intolerance's rather than allergies and wants him to see a GI after I follow up with allergist in June.

He has lots of appointments coming up:

Neurosurgeon w/ scan-June
CP Clinic-July

This list may seem long, but it is nothing compared to the past.  Instead of two appointments a month, he sometimes had two appointments a week.  Thank God for progress.

Wednesday, March 23, 2011

What a visit

Today was the best doctor appointment Randy has ever had.  No shots.  No blood draws or tests ordered.  No new meds.  He has a cold, but his ears are clear (right now).  He was soo cooperative.  He let Dr. P look in his ears and in his mouth (well barely).  He used the big boy scale and stood against the wall to be measured.  His stats are:

Height - 35.75 in (5th-10th percentile); I think he is about a half inch taller
Weight - 29 lbs (25th percentile)

I think his height is off because he cannot physically put his heels against the wall.  He slouched a little in order to keep his balance. 

We talked about his diet.  He did not have a lot of ideas; or at least the ideas he had were full of milk and eggs.  He liked the idea of me grinding almonds and putting them in foods.  He was OK with me adding baby meats to some dishes.  He says that feeding issues are slow to resolve.  Expect it to take time.  I have to up his vitamin to 1.5 ml, and we will talk about gummy vitamins next year.

Dr. P really wants me to get him as much speech therapy as possible.  He feels like he's doing well considering, but feels that more therapy can help close the gap.  He says that speech/cognitive that Randy is about a year behind, and gross motor about 18 months behind.  I grinned.  A year ago that would have freaked me out.  Today it made me smile.  I am in the acceptance stage.

Saturday, March 5, 2011

Normal EEG!

Great news.  I was actually shocked to see those words on the paper.  His last EEG in 2008 was "abnormal and inconclusive".  I guess someones brain has been on the mend.

Monday, February 21, 2011

I do more before 9 am than most toddlers do all day..

Although today was technically a "day off", Randy and I certainly had a lot to this morning.  Randy had a 7 am eye doctor appointment and an 8:15 EEG.  Let me clarify; a sleep deprived EEG.  Last night we were instructed to keep him up until 11 pm.  Then we had to wake him at 5 am.  Then to make matters worst, he only had a 30 minute nap yesterday because his godparents were in town.

Despite having to wake a sleep deprived toddler up at 5 am, today was a good day.  The eye doctor says that Randy is still using both eyes together.  And guess what? We can stop patching his eye!!!!!  We have been patching Randy for TWO YEARS!  It has not always been an easy process.  He has gone from patching the left eye six hour per day to patching the left eye four hours per day to alternating eyes four hours per day down to two hours per day to two hours five days per week to two hours three days a week.  He has to go back to the eye doctor in two months.  If he is still using both eyes together, then he will continue with no patching and the doctor will schedule his strabismus surgery.

Randy was a total rock star during the EEG!  He laid on the cot nice and calm while she put on the electrodes and wrapped his head in gauze.  I then picked him up and sat in the rocker and he fell to sleep immediately.  The technician was so amazed that he was such a good boy.

I think she saw something and of course she did not tell me.  But I was having such an awesome day that I did not press it.  I'll just wait the 5 days that she says it takes to get the results.  Usually I'm fretting and needing to know, but not this time.  Nope I'm just enjoying the victory of the day.

Saturday, February 5, 2011

America's Next Top Male Model

This photo appears in their most recent catalog.  They came to Randy's daycare and used about five or so children to model with their equipment.  My photogenic toddler was one of the lucky few.  Some of the older children were used in multiple shots.  Randy was allowed to keep the frog and they sent him a check for $50.  Toy R Us here he comes!

I am glad they used special needs children.  There is nothing more irritating than seeing a child in a photo with a piece of equipment (ie: a walker) that they are obviously not using.  Just a mini-rant.

Wednesday, February 2, 2011

Pre-School Evaluation

Weather permitting, Randy will be evaluated by the school district for pre-school.  I am so nervous about this process.  Please pray that they get a good picture of my son's strengths and weaknesses and are able and willing to created an IEP that benefits him.

Saturday, January 29, 2011

Am I reading too much into this?

+I emailed Randy's teacher at the developmental pre school and asked for to write a summary of his present levels of performance and what he has accomplished this year and what he needs to be working on.  I am gathering data for his IEP meeting since he will be turning three in about six weeks.  His teacher forwarded the email to the PT, OT, SLT, and vision teacher so that they could give me feed back as well.  This is what the SLT wrote:

Here's a few s/l observations on Randy:

Verbal responses to questions are improving in accuracy but still very inconsistent; familiar questions are obviously easier.

Continues to have difficulty choosing an object requested when two choices given; strategies such as presenting each separately and letting him touch each before asking would be helpful

He is able to name some visually appropriate pictures however may perseverate on the name of one pic and use that word to name those following; ex. "happy"

He is able to spontaneously sing words of familiar songs and will sing and/or say words or phrases that are associated with an activity within his school routine in anticipation of the activity. (ex. sings "Open, shut them" when sits down for snack; says "other side" when handed chew tubing used for oral awareness))

He frequently echoes phrases he has heard, sometimes in a delayed manner.

His articulation appears to be within normal limits for his age; he's easy to understand most of the time.

This is also the same therapist that called me because she was concerned about the amount of echolalia that Randy was using.  I think the real reason it is bothering me is because I am worried about his speech..... No, I am worried about his language.  He says tons of words, but he does not "talk" to me.  He cannot tell me anything about his day.  He cannot tell me a story.  He cannot identify things.

Am I reading too much into this?