Finally some results

We finally heard from the geneticist yesterday that two of three of Scott's tests came back normal. Well the one that tells us about his size was not able to be analyzed because he was actually too young to have that test done. The test to make sure all his chromosomes were ok came back normal. We are now waiting for one other test to come back and we should know those results in the next two weeks hopefully. Scott is getting the hang of walking pretty quickly. He holds on to anything and everything and has learned how to get around pretty good. He likes to push his tractor around the house and use it as his little car. It's so funny watching him walk because he still is pretty small. Scott is starting to eat a lot more table foods and hopefully that will help with the weight gain and growth issues. Last time Scott was measured he was 15 lbs. and 26 1/4 inchess tall. Still pretty small but I'll take it. We are right now trying to find a really good recipe for a milk free soy free ice cream and we do not have an ice cream maker so if anyone has a good recipe feel free to share and hopefully sometimes we can give Scott a yummy treat. Well take care and sorry I don't get to update too often it's been really busy lately!! God Bless

Good News

Well sorry it has taken so long to update this but I have been really busy with work. Recently Scott gained a pound and a half in the past two months!! This is really great for him as he was only gaining an average of half a pound a month!! He is doing a lot better with his oral texture sensitivity and is eating a lot more table food. Also they decided since Scott is over a year old he no longer needs to be on an infant formula but due to his milk and soy allergies he is on a one year and older formula which is hypoallergenic and is prescription only. It is called Elecare and it is great because it is 30 calories per ounce which I'm sure is also helping with the weight gain. We are still waiting to hear back from his genetics testing but I guess no news is good news right?? Scott is due to see an allergist on April 21st. It sounds so far away but it is the soonest appointment we could get when I will be able to make it with my crazy work schedule. Brandon finally got a good full time job after being laid off four times so things around the house are getting a lot better too. Not quite as stressful although we are still trying to get caught up with a few things. Well I hope this weight gain keeps up as Scott seems to be doing so well right now. All we have to hope for is that his fine motor skills keep improving. He is doing better with the eating it is just the small things like the pincher grip and stuff like that that we have to work on. He still wants to grab everything with his fist instead of using his thumb and first finger. Well hope everyone has a good week and I will try to update you all sooner!! God Bless

Good News

Well Scott had his feeding and nutrition appointment today and since january 9th he has gained almost a pound and a half if the scale is correct!! That takes him up to 14 lbs. 2.5 oz.!!!! They referred us to a new formula and some tips to get him to eat better and help with digestion. He will be seeing an allergist and the feeding and nutrition clinic will talk with his primary doc to see if a gastroenterologist will be necessary since he should be gaining a lot more and a lot quicker considering the amount of calories he gets a day. Well that is my update and good news. I will update whenever i get any results back from genetics!! Thanks for the support and keep the prayers coming they are obviously working!!!!

Virtual Baby Shower

Go to for the best virtual baby shower ever. You can also donate to two very amazing babies who really need our help. This is an amazing cause and everyone should defintely check it out!!!!


Thanks

Holly

Geneticist

Well we had Scott's genetics appointment. Everything went well. She took some measurements like the trunk to crown and she measured his finger for some reason. They said it could take up to 5 weeks to get all the tests back. They did tell us though that if anything comes back abnormal they will notify us immediately otherwise no news is good news and we will just have to wait it out. Well sorry it took so long to post this. His appointment was the 3rd and I am just now posting but I have been super busy and Scott has been a handful lately. Everything else is going ok. Well just please keep us in your prayers and hope they figure out what is going on and hope it is nothing too bad. Well thanks for all your support and prayers. They are much needed and much appreciated.

My baby at Christmas

From the beginning

Well since I am starting this kinda late in the game let me get you all up to speed. When I was pregnant with Scott I got very ill and was diagnosed with severe preeclampsia and HELLP Syndrome. These two illnesses can both be very serious and are life threatening. I was induced at 32 weeks due to the severity of both diseases and to avoid me having seizures and strokes while pregnant. Scott was in the NICU at MetroHealth Medical Center which is a level 1 trauma center for 46 days. I had to be delivered at a level 1 due to the complications I was having because other hospitals wouldn't have the tecnology to deliver me. The most difficult thing was not being able to drive for 6 weeks because I was still at risk for seizures and strokes from the PE and HELLP and since Scott was in the NICU I had to have someone else drive me to the hospital every time I wanted to see my dear son. It was very hard not to be able to just go to see my son whenever I wanted and having to rely on other people to be able to go see him. Finally the same day as my 6 weeks check up Scott came home and this was the happiest day of my life. I finally had my angel home. Scott had many obstacles he had overcame and I was so proud. He came off the ventilator after only 1 day. He went from a nasal canula to a CPAP and back to a nasal canula. He was on a feeding tube for what seemed like forever though because he didn't do to well with the eating it was too tiring for him. He was unfortunately still dealing with a reflux problem and trying to find out which formula would be best for him due to his allergy to milk and soy both though. So anyways, Scott came home on an apnea monitor which he was on until April. After coming off the monitor everything seemed great. When Scott was 5 months old we found out that what we thought was an undescended testicle ended up being a right inguinal hernia. So Scott had surgery to fix this problem in the beginning of June. Everything since has been fine. The only thing Scott was still battling was his slow weight gain. We had him on a 24 calorie per ounce diet with the formula versus a 20 calorie per ounce diet and we were feeding him whenever he acted hungry. He has been getting 40 or more ounces of formula a day. Well unfortunately we got some really bad news at his 12 month check up. Scott had only gained 10 ounces in 2 months. He was gaining atleast a pound a month so this is a huge drop for him. We are now being referred to a geneticist, endocrinologist, and a metabolist to find out if there is anything wrong with Scott genetically, or if he has a thyroid problem or an overactive metabolism. I am asking anyone and everyone to please pray for my little boy to not have any major problems. I am hoping it is something simple such as an overactive metabolism because that is something that can easily be treated. Thanks for all your help and support!!!!