Organized by: Stacy Anne
A walk of a lifetime one that we as parents would never want to see another family go through...Zeke is 8 months old today, he's been doing well with everything he's 13.4 lbs and 21 1/2 inches long. He's had some fluctuating blood pressures but his labs are good, he's on .7 oxygen. he still hasn't been successful on the cycler (the key to going home) he was at 200 ml fill volume (amount of fluid going into him) he's back tracked a little but on that volume, he was having problems breathing so they kept having to go up on his oxygen levels and down on his fill volume so he's at 180 mls now, they haven't tried the cycler in almost a month because of his drain amounts he is supposed to be draining 180 mls or above and he's been breaking even or less than. Just recently he's had better drains so he's going steady on his dialysis for now, still not ready to come home which is okay, we are still trying to save for an apartment that will accommodate his needs and is in the area that is conveniently close to the hospital because we will be in and out for labs and check ups. we hoped that we'd be discharged sometime this year but it doesn't look like that. Zeke has had his own agenda since day one and he is definitely resilient He had an eye exam today he is severely near sided they can still focus on objects/people near but hard to focus far, his ROP is stable, reacting to lights and eye exam he is having trouble tracking but fixates well. He still possibly might need glasses in the future but the doctor is glad he's progressing the way he is, given the severity of the ROP. Wednesday the audiologist came in to see how he was doing with the hearing aids and he adjusted the volume once already and he said that there's one more volume if he's not responding by then we'll have to explore other options. We've been working with the development more to help him with his muscles and reaction to help him from falling behind anymore than he already has, he's been doing well with that he doesn't mind the tummy time to help him move better, he's still trying to roll over and has better control of his head. Speech sees him 2-3x a week we have to be patient with him taking a bottle, a baby who once guzzled down a bottle now has a borderline oral aversion so if he takes the bottle it takes 40+ minutes because he gags, chokes, and sometimes throws up. Zeke is getting there, slowly but surely and I know that eventually get there and I know its day by day and at some points hour by hour. This time of year is hard to be in a hospital but we're surviving and as long as Zeke is doing well we will be too. We recently were discharged from the hospital due to some unforeseen circumstances , Phoenix Children's Hospital was not able to do anything more for him. Now the long journey to find a hospital in which we can seek the help we need starts. These hospitals are renowned for kidney transplants but are miles and miles away with little funds to support our little boy i made this fundraiser to help with hopes of maybe finding someone with a big enough heart to help us through this..in time i wish to repay this generosity but for now i am praying we find the miracle we need to save our wonderful son Ezekiel!