Wednesday, April 28, 2010

Leaving for a month for HBOT

So we are headed for an adventure to NC! We will be gone for one month to try hyperbaric oxygen treatments (HBOT) It will be done twice a day for 6 days a week! We are excited to go and can't wait to see the results! I actually know someone that has gone through it already and will be back when we are there. I have actually known this person a fellow micro preemie mom from way back when I was on a forum for pregnant with twins. We both lost one of our sons and our surviving sons are very similar in aspects to their CP. I believe her son was a 23 weeker and Jonathan is a 25 weeker and they were born a week apart! Well she seen a difference in her son and thats why they are going back. So we looked into doing this last summer because there is a treatment center only 5 miles from us! However they do more geriatrics then children and since this is our first time I wanted LOTS of experience for Jonathan! This place we are going is all about children so like I said we are excited! I will try and post as much as possible while we are there to update everyone! Please keep us in your prayers!

Monday, April 26, 2010

A Day Out with Thomas

My dad and brother took Jonathan to Greenfield Village for a Day Out with Thomas the train! Jonathan loves trains and had a lot of fun despite the colder weather! Last year Jonathan would have never let any stranger touch him let alone put a temp. tattoo on him but this year was different he watched the lady put it on, his muscles were not tight and was happy enough to let her put one more on the other arm! Funny thing when I was little my parents were strict and I could never have a temp. tattoo because I might get some kind of ink poisoning but my son gets two!
When you look at his photos notice how great his head is midline and his muscles aren't to tight and this is him with NO baclofen, I love it but wish I would have taken him off sooner!

Tuesday, April 20, 2010

All about Jonathan

Jonathan is in the middle of lifting his head!

So much to blog so little time!

Well Jonathan got his new AFO's (braces to help correct his walking) and he didn't mind the braces however it was hard for him to walk with the braces and shoes since the shoes are one size bigger so they are a tad heavy but he is getting used to them and I see a little of an improvement but now we have a problem of the AFO's not fitting so we are waiting for the orthopedists to come out and either fix the area they are making red marks on his foot or he might need new ones!

Jonathan is officially in a big boy bed, no more crib! He likes it for the whooping 20 minutes he is in it but still prefers to sleep right next to grams and papa!On the weekends he is right next to Justin and I and Leah is in her bassinet on the other side, one big happy family!

Jonathan has started swimming and LOVES it, we have taken him off his baclofen and we (therapists incl.) have seen some remarkable stuff he is moving his arms so free. He now waves bye bye with his whole arm. He is reaching and grabbing for things the therapists puts in the pool, hi is in a GREAT mood! It is the best thing to see your child achieve and conquer things he has been trying so hard to do, we are all so proud! He is now saying bubbles and he has been saying hi however he is using it correctly too! When we meet someone or he see his therapist he says hi, its great!

So this past weekend my parents and brother wanted to take Jonathan to the monster truck show my response, yea right way to loud for him even if he wore earmuffs! So we compromised they took him for the pit pass engagement. He looks like he enjoyed by the pictures. My mom says he was laughing and smiling at all the big trucks so I was happy he went to that. My brother says he thinks it was the showgirls in skimpy outfits that he liked, oh boy! So theres our little man all boy for sure! Can't wait till this years fairs for the demolition derbies and truck pulls he did love those too!

Sunday, April 11, 2010

5 months old

Yes Leah is 5 months old she is getting so big! She is now sitting almost unassisted, she is on her belly and is kicking to start scooting, she is talking up a storm(babble), she is now eating cereal, she loves to stand, she is very observant, she puts EVERYTHING in her mouth, she's been rolling for the last couple weeks, she loves car rides, and she now puts her arms up almost consistently for "up" she is very smart and I am not just saying that cause she is my kid, she really is she picks up things so fast and her pediatrician still thinks she is a month to two ahead of her peers.

We are very proud of her. She sees a p.t for some very minor torticollis and actually we will be discharged in a couple weeks but her therapist says she has never worked or known of a baby at 4 months old trying to sit up and play with her toys she said it is so rare and now that she is 5 months old we can let her go for almost 10 seconds without her falling to the side! The therapist thinks with just how fast she is going trying to scoot on her belly she may be crawling soon, she also thinks she may be an early talker and walker. Its just awesome not only is she doing good but she has helped Jonathan already in so many ways. I just love my children they are the best in the WORLD

Monday, April 5, 2010

21 Weeks

Your probably wondering why I would name a post 21 weeks, why is this so significant? Well 21 weeks is when my water broke and I ended up in the hospital till the boys were born(they were born at 25 weeks). 21 weeks is how long Jonathan(Preston passed away) stayed in the hospitals neonatal intensive care unit. And 21 weeks is how old Leah is.
I never realized how long 21 weeks really is, it seemed like forever when we were in the hospital but 21 weeks have flown by with Leah. 21 weeks almost 1/2 a year, a half year I missed bonding with Jonathan. Leah was born 5 weeks early but the bonding started right away as she was pulled out and we heard her cry o.k scream she was placed on my chest. What a feeling a feeling I missed with my boys a feeling I longed for. Leah came home with us and fortunutly no nicu time. We co sleep with her, she lives in her baby bjorn attached to me most of the day I know her cries I try to know her wants before she cries, some call this attached parenting I call it "normal" For the last 21 weeks I have been able to kiss, love, and snuggle with Leah. I play with her and will just look into her blue eyes that are looking right back at me and think this is what its suppose to be like, this is how all moms(dads too) should be able to bond with their babies. My bonding with Jonathan didn't really start till he was home. Yes I was able to hold Jonathan and kiss him in the n.i but its not the same you have nurses watching you, some thinking why is she holding him so tight, why does she kiss him so much. (I can tell any of you, you will never know what its like to have a micro-preemie and I pray you never will have to know what its like!) A nurse actually had the audacity to tell a social worker she was worried about Jonathans safety because I cried a lot, WHAT? My little boy fought for his life. I seen him get poked, bagged, surgry at 2 lbs, My baby boy Preston passed away after 6 hours, I cried a lot? I would love to tell that nurse guess what I still cry for all 3 of my children, Jonathan because I see just how far he has and is going for Preston because I miss him so much and Leah because she is just growing up so fast, too fast!I am just overwhelmed with joy for my 2 PERFECT living children. I still kiss and love on Jonathan I just wish the bond would have started from the begining with BOTH my boys!

This story is true and it represents a fair share of mothers out there that have premature babies. Nobody should have to see their baby suffer from premature birth and in my case a death too! YOU can help prevent premature births by donating to the MARCH of DIMES. By donating the money raised for March for Babies you will be helping: all-important research offering preventions and solutions for babies born too soon or with birth defects

...educate women on things they can do to increase their chances of having a healthy baby

...provide comfort and information to families with a newborn in intensive care

...push for newborn screening and health insurance for all pregnant women and children.

The mission of March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality.

If you would like to donate please go to and on the right hand side you can click to donate! I love this family we have become very good friends they have triplets that were born 14 weeks to soon and they are doing amazing!
We walked last year however this year we will be leaving April 23 to north carolina for a month to try HBOT hyper baric oxygen treatment for Jonathan! We will be donating to this cause and hopefully next year we can walk again!