Been so VERY long

It has been so long since I have last posted.  Life seems to get in the way of blogging.  I have found that most of the older micro preemie moms slack off on their blogs around the age of 4.  I am not sure why that happens.  Could be that life gets busier with the children in school? Could be that we start to think about how our child feels having their pics out there? Or could it be that we just get tired of talking about it?  I am not sure, but I have certainly fallen into that category.


Randy is six now and on his way to kindergarten.  I waited a year to send him and I think it will be one of the best decisions I could have made.  He is so much more mature now that a year ago.  He is able to regulate his emotions better.  He is able to communicate the Why and How questions better.  He is pretty solid academically knowing all his letter and sounds and spelling some short words.  He will still have an IEP and will be in a mainstream classroom with vision supports and support from the intervention specialist.  I am nervous as he exits preschool and becomes a school age child.


Randy is doing hippo therapy weekly and his therapist boasts on how strong his core is becoming.  I notice that he is beginning to run and not gallop.  It is still a very crude run, but is vastly improved from just six months ago.  He is also still swimming.  He can swim two complete laps (four lengths of the pool).  I am beyond thrilled.  His teachers want to boot him  adaptive aquatics because he is doing so well.  I have mixed feelings about this.  I understand that they may need room for a more involved child; I get that.  But I think what frustrates me is that when a child is successful with accommodations then people automatically assume they no longer need the accommodation.  Maybe they were successful because that had the accommodation.  This happens in education as well.  I am not sure why some follow a failure model.


Randy is riding his tricycle very well.  I found a larger one at Tractor Supply Store.  It is pretty big.  I hope that next year I get him to ride a two wheeler with training wheels.  Right now he is too unsteady.  I guess that is it for now.  I may do a medical update post soon.

Easter 2013

Foto Friday

Hv. As. Arc fe

Foto Friday

Foto Friday

Foto Friday

Operation Big Boy Underpants

The mission started today. Randy has on underwear. No pull-ups except at bedtime. Four hours in and he has peed on himself twice and has NOT peed in the potty. I am hoping that Brobee will motivate him to pee in the potty.

2011 in Review

Randy made so much progress in 2011. He changed from a baby to a little boy. Physically he is so much stronger. He is handling stairs with a rail and can handle one step without a rail. He has gotten "big". He is still slightly smaller than his peers, but not by much. At almost four, he is about 37 inches and 33 lbs. He added two whole fruits to his diet: mandarin oranges and bananas; and one vegetable: green beans. I still mash and/blend much of his food, bur he is slowly starting to take risks.

His speech has exploded! He speaks in 4-5 word sentences and will question you all day. He is currently working on W questions in speech and is learning something new all the time at pre-school.

Of course I still worry about his development. His attention and maturity are poor, thus he finds it difficult to play with his peers. It I'd even more worrisome because he now wants to play with them. Before he would basically ignore other children. I am hoping that time and pre-school will help in this area.

2011 is another year that I am in awe of my son and his progress. I feel so blessed to be his mom and to be able to witness first hand what a miracle that has taken place through him.

Glasses

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.

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.

I have an I Phone!!

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

Summer Fun 2011

Operation ditch paci

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

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.

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.

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).

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.

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.

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:

ENT-May
Allergist-June
Neurosurgeon w/ scan-June
Opthamologist-July
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.