Letter About Zachary

I just wanted to let everyone know what is going on since we were given the most important information yesterday………..

We have been threw a rough 2 years with Zach but things have gotten much worse this past year, really much worse the past 6 months. As most of you know Zachary’s size has been a constant issue – he has been failure to thrive since he was 3 months old and because of a pediatrician who (in my opinion) didn’t know how to handle a kid like Zach, it took us a year and a half to finally get into the right doctors for some help. After many long discussions, many doctors’ appointments, a ton of tests, a lot of therapy, and finally a larger decline in Zach’s weight and feedings he will be having surgery on 10/23 – next Thursday to have feeding tube placed.

To bring you all up to speed (bare with me as I know some of you know the story) – I knew something wasn’t right with Zach and went behind our doctor to get Zach into our early intervention program at 18mts – when I went to her to tell him the services he qualified for she laughed and said “they didn’t know him”, I in turn said “you’ve lost a patient” and took Zach to our new dr (I swear she is an angel on Earth)– who as soon as she saw him said “we don’t have time to waste” and sent him to numerous specialists saying she knew his case was too much for her to handle. Zach has been tested for everything under the sun trying to find what is wrong – as everyone he has seen agrees something is not right!. For the last 6 months we have been on a better track but still don’t have all the answers. By now I’m at my wits end as he sees his pediatrician, geneticist, endocrinologist, GI, dietician, neurologist, allergist, ophthalmologist, ENT, developmental pediatrician, ped dentist (this isn’t for normal visits like one would think – he has a very small, high pallet, and extra teeth – so needs to be monitored more closely), and now will be monitored by the ped surgeon, plus his SLP, OT, and PT. You’d think with all these people they could sit and talk, brainstorm for what is happening to Zachary.

He has been diagnoses with FTT (failure to thrive), in a full year Zach has only grown 3 inches and 3 lbs (normal growth is 4-5 inches and ½ lb per month). Zachary also has Dyspraxia (motor, oral, and verbal) – not a late talker, his brain knows what he wants but the signal does not go to his mouth to let him speak. He is coming a long way - from no sounds to sounds, to can say some words although not all the time – we try to use sign but the motor dyspraxia is affecting this, so our main source of communication with him is a PECS system. Gastroparesis: This is a delay in the emptying of the stomach. We are waiting on an official diagnosis of Russell Silver Syndrome – basically a very rare form of dwarfism. He has hypotonia aka low muscle tone – this is affecting him in many ways one of which may be his eating another is how clumsy he still is because he doesn’t have strength like a typical 2 year old. He also has SPD aka sensory processing disorder. Last but not least is his anaphylaxis to milk and plain food allergy to soy.

Russell Silver Syndrome tends to be diagnosed clinically which makes it very tricky if the Geneticist hasn’t seen very many cases. We have one Geneticist who says “I think RSS is it” and one who says “I’m not too sure” There is a blood test which we just ran yesterday but chances of finding it are so slim (7-10% for one of the tests and 20% for the other) even if the test comes back without it – RSS is not ruled out. In mine and Doug’s heart we feel this is what Zachary has.

Right now our priority is to get Zach to grow this will be done with the help of the feeding tube – it is nice to know all of his Drs agree with this being done. Zach will be receiving constant feedings threw the night as well as 2 more feedings with his pump during the day. We will be able to feed him by mouth as well (if he will take it – as lately he doesn’t want to eat) the more he takes by mouth the less he will need from the tube during the day. They have told us this will take 3-4 months before we notice how well it is helping him.

When we asked the surgeon how long he will have the tube he replied “some people have them for life” When we asked the GI the same question he replied “it will not be a short term thing”

Here is a link to the exact tube Zachary will be getting next week --- http://www.mic-key.com/index.asp?page=product

We are thankful that they will not be trying the NG-tube first as our stay in the hospital would have been roughly a month. Right now we are looking at a 2-3 day stay if the surgery goes as planned. He is planning on doing it laparoscopic instead of an open surgery but will do whatever is in Zach’s best interest once in the OR. We won’t know until the day of the surgery if they will be placing the tube like a g-tube, j-tube, or a gj-tube.

We were also told about another surgery they typically do at the same time called a Nissan but for Zach’s case right now they will not be doing it – however it is a possibility in the future.

Both Doug and I have a million emotions running threw us right now – the life we were used to is about to change. We are always reminding ourselves it is going to be difficult but it isn’t something we can’t handle and it is what is best for Zachary now and in the long run!

I don’t want to forget about Zoë – she has been the best sister that has ever existed! She has asked questions, and looked at the tube. She has been telling Zach he will be fine and that it is “cool” he’ll get to eat threw his tummy. She even came up with calling it a tubie hose. I’m not 100% she gets this – heck Doug and I still don’t completely get this! We just hope that we can keep her feeling special as she is and always has been.

Thanks for reading and sorry about the repeat for some of you – I wrote and just needed to get it all out at one time. Repeating myself is not so easy anymore.

Love,
Sophie