Eye and Physio Update

On Friday we went to the University of Waterloo's Paediatric and Special Needs Optometry Clinic to have Gideon's eyes assessed.  We didn't have his lenses with us because the person calling us with the appointment told us he shouldn't have them in during the appointment.  Unfortunately the opposite was true and he should have had them in.  They tried to do the assessment with his glasses on. The end result was 20/300 vision with his right eye being stronger than the left.  We will go back in three months for another assessment.

I met with physio yesterday and she would like us to buy a "vasi vertical stander" for Gideon.

The assistive devices program (ADP) should cover the cost of a very basic version.  If we want to upgrade than we will have to pay some extra. 

This device will help Gideon stand and hopefully help orientate him to being in a vertical position.  We have no idea how long he will need this for.  

(My heart broke a little more with the realization that he needs equipment like this. Sometimes it is hard to hold back my tears.  I wish I could just make everything better.)   

Bad Day

What would you do if you found out your co-worker didn't think you should keep your job if you couldn't work 5 days a week in 6 months time due to your child's medical appointment obligations?

Answer- Cry.

Now You Know

Now you know:  Batman is faster than a cheetah!

The other day Alex wanted to have a race: I was suppose to be a cheetah.  He was going to be Batman.

He then explained that Batman was going to win the race with his rubber boots.

Now you know.

Pneumonia Blues

Gideon was admitted to the hospital Tuesday night with pneumonia. After a short stay, we are now home with new puffers, antibiotics and a dose of steroids.  He's still coughing but the medication seems to be helping a lot.  We had another EKG done at the hospital which suggested that there might be some thickening in his heart muscles.  We will have to go back to get an Echo done.

I am tired and my spirit is drained.

 

Downs and Ups

The boys are asleep.  They are just as exhausted as both John and I are.  This past week we have shifted between exhaustion and alerted anxiety as Gideon went through yet another "sick spell".  Gideon had an Upper GI study done on Wednesday which left him constipated due to the barium he had to drink for the exam.  He was throwing up and screaming in pain while trying to have a bowel movement.  He was also throwing up his bottles because there was no room left for food.  I brought him into the local ER twice on Saturday (we were discharged at 2:30 in the morning) which hydrated him with an IV and gave him an enema that helped him get rid of some of his stool.  On Sunday, he was still throwing up his bottles so I brought him to the one hospital in the area with a Pediatrics team.  They admitted Gideon after he projectile vomited in the ER room, leaving multiple pools of regurgitated formula on the floor, my lap, my shoes etc.  Poor Gideon had to get an IV in his head because they couldn't find anything suitable on his arms or feet.  Then the IV came out.  They put another one in his head after he was admitted; This one too malfunctioned and had to be abandoned.  He fortunately was able to keep the electrolyte fluid down through the night and did not have any vomiting.  We were discharged this afternoon on a clear fluid diet.  Tomorrow I will try and introduce small regular feeds throughout the day and keep an eye on his temperature.  Please send us your thoughts and prayers that he will climb over this feeding hurdle once again.  

Finding purpose and reason at times like this is so challenging.  It's hard to understand why Gideon has to go through so many struggles.  On top of all his physical ailments, he has to be tormented with difficult IV's, have his hair ripped out/cut out from bad IV tape jobs, be interrupted for vitals just when he has settled and fallen asleep- the poor little guy probably thought he was being tortured.  It was completely heart wrenching for me to watch and even worse when I couldn't console him.  I find myself searching for and calling upon inner strength that I had no idea even existed - and that's probably why I'm so exhausted.

Why is it that I turn inward instead of towards my faith?

I feel burnt out.  I feel lost. I feel like the rug has been pulled from under my feet.

Yet my faith holds fast.  I grasp onto it; some days it grasps onto me.  Somehow it propels me forward.

Tonight I read through a blog from a very dear friend of mine who is going through her own struggles. Her encouragement has really struck a chord with me.  If you are looking for something uplifting and faith renewing, please check out her current project "31 Days of Encouragment" -   Beautiful Susan

*Cough* *Cough*

I brought Gideon to the hospital yesterday to get him checked out.  He has a nasty cough/wheeze and was even throwing up yesterday. (Whole bottles!)  With our current feeding issues, I wanted to make sure he didn't have pneumonia (infection in the lungs) due to aspiration.  The chest xrays looked fine but he sounded really crackly.  The doctor gave us a prescription for two different puffers and told us to keep on eye on him.  Last night he actually slept.  Prior to this, my poor little chickadee had not been sleeping so well with all the coughing and wheezing; I'm glad the puffers are working.  He's still a little crankier than usual.  On the up side he's loving the snuggles, which I am more than happy to give.

Let's all hope that the puffers keep the pneumonia at bay and this clears up sooner rather than later.        

Eventful Week

1. I have started back at work for two days a week.  My work place is being fairly accommodating by letting me return to work on a temporary part time basis and working up my hours, back to full time, over time.  This has been a very difficult decision for me.  It has been tormenting me for the past few months.  I knew that Gideon was not ready for me to go back full time and that a full time schedule would not be able to accommodate all the in house workers that he still needs to see. (Physio, OT, Dietitian, Speech, Low Vision)  I thought that I should at least trial it.  To be honest, it's still really difficult for me to say if I am hoping this will succeed or not.  I guess this is where blind faith comes in.  I feel like I can only sit back and watch as things go in whatever direction they may - Laissez-faire - not interfering, just floating along as usual, letting life's events dictate our course.

 2.  Gideon has started daycare.  With me returning to work, Gideon has started attending a daycare for two days a week.  We had to put him in a larger center, rather than a small in home daycare, so he could receive the funding for one on one services. This means that Alex and Gideon are going to two separate places and our morning drop off's are tight- very tight.  Gideon's first day went really well.  My only concern is that it is a French daycare.  Because Gideon is blind, he needs a lot of auditory cues letting him know what is going to be happening.  Maybe the French will be confusing, maybe it will be stimulating, maybe he will come home one day saying "le waaaaaa"- only time will tell.

3. Test results have come in.  We had our eye exam under sedation on Wednesday.  Our eye surgeon said that the cataracts are nowhere to be seen and that his eye pressures where looking good.  She did reassert that the back of his eyes are very under developed- this would be his Anophthalmia/Mircophthalmia   .  One blessing is that his manifestation could be far worse and that it doesn't really effect his appearance.  She also mentioned that his eye prescription has changed slightly- I'm not sure what it is now but it should be in the mail.

We also saw the geneticist on Wednesday.  She is doing a test to rule out Lowes Syndrome .  She also reviewed the MRI Gideon had last month.  There was some thickening in specific parts of his cortex.  The radiologist didn't know how to interpret what he saw so the geneticist is referring us to a neurologist.  We also talked about what our next step would be if Lowes Syndrome does get ruled out- an expansive exome sequencing test that would compare Gideon's gene's to both mine and John's.  It usually results in a 25% chance of finding a diagnosis.  This test could, if we wanted to, also find gene's responsible for medical conditions not associated with his syndrome ie. a gene responsible for colon cancer. Because John and I are also submitting samples, we have the option of learning about our own genes and if we have any that can impact our health.  Whether we actually want to know this is another question.  If it comes to this test, we will have to think hard on it.