Wednesday, April 29, 2009
Thanks to everyone!
Thank you to everyone that donated to March of Dimes. The walk was absolutly perfect, the weather was great however it did start to get really hot! We were able to raise $800 and we are still getting donations! Jonathan did really good he slept for most of the walk then was up and just taking it all in. We had 12 people walk with us and that felt good knowing how much support we really have. The walk was very organized and at one point they had a memorial garden for the babies that have passed and of course we made an angel for Preston, I started crying I miss that little boy so much and wish he was here with us! We also met up with our friends the Buckleys they have triplets that were born at 26 weeks and their one daughter made an angel for Preston and gave it a kiss, that of course brought tears to my eyes too! Speaking of the Buckleys their other daughter and Jonathan will be starting horseback riding this saturday I am super excited! I really hope Jonathan will enjoy it. Jonathan is doing more babbling and doing excellent in aqua therapy we started at a new place for occupational therapy and so far I am not to impressed but we'll see how it goes I need to give it a little more time. Jonathan went to the pediatrician this past friday and is now a whopping 19lbs 3ozs I am not pushing to much more in him because he did gain about a pound in 2 weeks a bit fast for his age, funny how months ago we needed him to eat everything and now I'm slowing things down! Well I have no pics of the walk since my camera needed to be charged and I forgot to do that! Thanks again for everyone that helped March for Babies!!!
Saturday, April 18, 2009
A year ago yesterday!
Has it really been a year? The time did go by pretty fast! Just in case you have no idea what I'm talking about its been one year since Jonathan came home from the NICU. Wow things have definitely changed in this past year (to say the least). When Jonathan came home I thought I was super mom there was nothing that could try my nerves, there was going to be no such thing as being sleep deprived,I knew everything about my baby there was nothing that was going to surprise me, and this parent had the whole parenting thing down I mean I did spend everyday of the 21 weeks he was in the NI sometimes I thought I was the nurse boy was I WRONG!!!
When Jonathan came home on April 17 2008 I will admit it was easy he was eating on schedule sleeping a full 10 to 12 hours at night I had no complaints. Then in June we started him on cereal and stage one baby food, sure it got messy but he was eating. Then starting in July/August he started crying not just crying but an all out cry for 20 hours a day sleeping for an hour here and an hour there. It was o.k however he was probably going through a stage and surely by the end of the week he'll be back to his normal happy self! Wrong again! After about 3 weeks of this I was completely sleep deprived, I had no idea what to do and sometimes we both cryed!This non stop crying went on until the end of nov. then finally our ped suggested we go to a pm&r doctor and she prescribed the most beautiful drug in the world..baclofen. Once Jonathan got his first dose there in front of us was a happy, cheerful babbling little guy! Oh I will not miss those days of crying! Then there was his feeding, feeding uggg! We went a slight step back and had to get Jonathan an NG tube to feed him because he was eating but not enough to gain weight, he had his for about 3 months and then we did the unthinkable or at least that's what I thought at the time, we had Jonathan get the G tube surgery. Today I can say it is a relief not to worry anymore about getting every drop of butter in him or every last bottle down his NG because now I stop to think how miserable that must have felt like! The biggest news I can report is Jonathan is no longer losing weight but is a chunky monkey at 18 1/2 pounds and 30 inches long! He is doing swell in therapy actually we got a stander which I need to take pics of, he did not like it at all we have to really work on getting him to stand in it then once he's not scared he's o.k and he loves us to pull him around te house. Next week p.t is bring over a pony walker because this boy WANTS to walk so this should help him. His head control is coming around I am sure by this fall he will have it under more control. We start therapeutic riding in May and I hope that he likes it, we have been putting him on our 105 pound dog to ride around and he smiles up a storm its cute to see! He also has more hair just on the top, actually just enough for daddy to mohawk it! And last but not least he has his first tooth it is really white and big its cute to see his smile with the one big tooth. His top gums are really swollen so I'm thinking those are coming soon plus the whining crying don't let me down I'm going die if you leave me cry and you feel so bad so you end up carring him EVERYWHERE(grandpa)! Miraculously he stops crying and he feels all better:) Enjoy the pics
Saturday, April 11, 2009
Our Virginia Vacation!
We are home and had a great time! Jonathan did so good with a lot of help from my mom and dad. He was happy the whole time actually not until the day before we were going to leave did he get a little fussy. We took the in laws motor home so that was a treat, Jonathan sat right in front of a window so that kept him entertained through most of the trip. When we got to my aunt and uncles home it was about 65 degrees a lot warmer that when we left our home at 40 degrees. Jonathan absolutely hammed it up with everyone he giggled and showed off his kicking techniques. He loved my aunt holding him this was actually the first time in a long winter hibernation that someone other than mom, dad and grandparents held him on the other hand he loved my uncle from anyone elses arms he just wasn't so sure about uncle Dave holding him (he does love you though uncle Dave:)) We went to Washington D.C where Jonathan "walked" a lot in central park,
we seen the white house the capital building, the pentagon, the Washington monument, and even walked around the largest seafood barge Justin and my dad enjoyed that not so much myself and mom it was a bit stinky! We went on lots of drives and went to a beach called Colonial beach Justin really liked this because when you enter the town it says "you are now entering a golf cart community" and they weren't joking there were lifted golf carts everywhere! Jonathan slept through most of that trip. Then we went to downtown Fredericksburg that was interesting but what I thought was the coolest was the caverns I really didn't know how Jonathan would take this because of the elevation and his lungs, well I guess I worry a bit much because he was perfectly fine! 
Then we drove through Shenandoah National park that was breathtaking surprisingly the deer there are not afraid of you and come right up to you we did stay in our car for that! Jonathan for the most part was vomit free except when Justin had him try cocktail sauce errr! Then it was time to leave and we had to leave a day early because an unexpected SNOW storm was coming to Michigan and that is what Justin does, snow removal! Do you know how depressing it is to leave 65-75 degree weather, the day we left people were mowing their grass!!! We did make it home just in time for the big snow storm but because we had to cut our trip short we will have to go on another!!! Thank you so much for everything uncle Dave, aunt Carole and Kenny we had a great time!!
P.s If anybody here in Michigan wants to try the best burger around go to 5 guys burger and fries, we went in Virginia and we are all hooked, theres a couple here too
Tuesday, March 24, 2009
FIRST TOOTH!
Yes thats right Jonathan finally got his first tooth, the bottom middle one. He was cranky and had a slight temp. I wondered if it could be a tooth but have been telling everyone for the last eight months "I think he's getting his first tooth" but now I can really say it and in a way I am glad its here but in some way I am going to miss that famous toothless grin! 
Well the next day he was fine and then he started getting a fever again and it was 99.7 which is where it was when his tooth came in so nothing to worry about however a little later my parents called to say it was 100.9 o.k so I know its not a tooth and Justin and I were in Grand Rapids which is about an hour and half away. I told my parents give him some Tylenol and take his temp in about 1/2 hour. Well not good it was 101.9, so we were already on our way back and I called the peds office and it was an ear infection! So the last couple days have been whining and crying from both of us:) He is feeling much better now and I started him on his blenderized diet and we have completely taken him of prevacid which I thought was crazy since he was on a very hefty dose (21mg) but it has proven that he will puke on it or without it! Our GI still can't figure why Jonathan wants to eat but after acouple bites pukes then wants more, however he did eat mashed potatoes the other night and he drank from a real glass and did great! So we will try again slowly. His feeds are going o.k thanks to my online friend Shannon and Jonathan can down 4 ozs in 30 minutes via G tube but that means his tummy is expanding! He is still a peanut but is growing slowly the docs want him at 1000 cals a day to catch up I say yea right and to be perfectly honest every time I try to increase his calories he pukes so I believe his body is telling me that he can't handle anymore and yea he is gaining slowly but he is gaining on his own curve not what is the curve for "average" babies because we all know he is not average he is Jonathan and he is going to grow at his own pace yes he may be 2 and then hit the big 20lbs but guess what we will all be happy cause we aren't all stressed about him not getting enough calories, puking up all his calories and where can we fit an extra bottle in. I now know enough MICRO preemie parents and their kiddos are way below the "average" growth chart but every ones happy and another thing while I am still ranting I really dislike when doctors use the phrase failure to thrive because in my book Jonathan is underweight to their "average growth chart" however his hair is beautifully his skin is the softest, smoothest skin you have every felt, his head is growing his length is growing his nails grow like weeds he pees and poops regularly so how is he failing to thrive? O.k I am done with that!
Another great thing is therapy he is doing very well with his head not completely up but can manage it by that I mean he can control when his head goes down he is using his muscles to lower it and raise it where it used to just flop back! This next part is amazing! Jonathan is trying to walk yes I said walk if we stand him up while we are standing and he is in front of our legs so basically our legs support his head he will pick up his feet in the correct pattern, one leg the other leg and so on I showed the therapist and they were both blown away they said that usually doesn't happen that way! So Jonathan will be getting fit for a stander to help more of his head control. The therapist also commented on how his feet stay flat so that was good too! We are going to start therapeutic horseback riding in May and are very excited about this. The instructor will sit with Jonathan and work on his trunk. And last but definitely not least Jonathan is telling us with his eyes what he wants. The therapist suggested we take pictures of things his bottle, toys, highchair, swing, stroller, etc. and then ask him and see what he does so we have only done this, this past week but its working. I will ask him something and he responds with his eyes or he'll cry but hay I'll take anything! I didn't realize how well he really knows whats going on but his therapist Allison put a rabbit sock on his foot and she put that foot in his mouth and then out and back in and so on for about 5 minutes then asked Jonathan wheres your bunny well he lifted his foot that had the bunny and every time she asked he would show her while keeping his other foot down. So I was a little sceptic since the other foot is his weaker side so so repeated the same process with his other foot then asked him wheres your bunny and holy cow he lifted that foot while keeping his stronger one down! my kids a genius and this is what prompted the pictures and him "talking" with his eyes!
I love my boy so much!
Well the next day he was fine and then he started getting a fever again and it was 99.7 which is where it was when his tooth came in so nothing to worry about however a little later my parents called to say it was 100.9 o.k so I know its not a tooth and Justin and I were in Grand Rapids which is about an hour and half away. I told my parents give him some Tylenol and take his temp in about 1/2 hour. Well not good it was 101.9, so we were already on our way back and I called the peds office and it was an ear infection! So the last couple days have been whining and crying from both of us:) He is feeling much better now and I started him on his blenderized diet and we have completely taken him of prevacid which I thought was crazy since he was on a very hefty dose (21mg) but it has proven that he will puke on it or without it! Our GI still can't figure why Jonathan wants to eat but after acouple bites pukes then wants more, however he did eat mashed potatoes the other night and he drank from a real glass and did great! So we will try again slowly. His feeds are going o.k thanks to my online friend Shannon and Jonathan can down 4 ozs in 30 minutes via G tube but that means his tummy is expanding! He is still a peanut but is growing slowly the docs want him at 1000 cals a day to catch up I say yea right and to be perfectly honest every time I try to increase his calories he pukes so I believe his body is telling me that he can't handle anymore and yea he is gaining slowly but he is gaining on his own curve not what is the curve for "average" babies because we all know he is not average he is Jonathan and he is going to grow at his own pace yes he may be 2 and then hit the big 20lbs but guess what we will all be happy cause we aren't all stressed about him not getting enough calories, puking up all his calories and where can we fit an extra bottle in. I now know enough MICRO preemie parents and their kiddos are way below the "average" growth chart but every ones happy and another thing while I am still ranting I really dislike when doctors use the phrase failure to thrive because in my book Jonathan is underweight to their "average growth chart" however his hair is beautifully his skin is the softest, smoothest skin you have every felt, his head is growing his length is growing his nails grow like weeds he pees and poops regularly so how is he failing to thrive? O.k I am done with that! Another great thing is therapy he is doing very well with his head not completely up but can manage it by that I mean he can control when his head goes down he is using his muscles to lower it and raise it where it used to just flop back! This next part is amazing! Jonathan is trying to walk yes I said walk if we stand him up while we are standing and he is in front of our legs so basically our legs support his head he will pick up his feet in the correct pattern, one leg the other leg and so on I showed the therapist and they were both blown away they said that usually doesn't happen that way! So Jonathan will be getting fit for a stander to help more of his head control. The therapist also commented on how his feet stay flat so that was good too! We are going to start therapeutic horseback riding in May and are very excited about this. The instructor will sit with Jonathan and work on his trunk. And last but definitely not least Jonathan is telling us with his eyes what he wants. The therapist suggested we take pictures of things his bottle, toys, highchair, swing, stroller, etc. and then ask him and see what he does so we have only done this, this past week but its working. I will ask him something and he responds with his eyes or he'll cry but hay I'll take anything! I didn't realize how well he really knows whats going on but his therapist Allison put a rabbit sock on his foot and she put that foot in his mouth and then out and back in and so on for about 5 minutes then asked Jonathan wheres your bunny well he lifted his foot that had the bunny and every time she asked he would show her while keeping his other foot down. So I was a little sceptic since the other foot is his weaker side so so repeated the same process with his other foot then asked him wheres your bunny and holy cow he lifted that foot while keeping his stronger one down! my kids a genius and this is what prompted the pictures and him "talking" with his eyes!
I love my boy so much!
Wednesday, March 11, 2009
Sunday, March 8, 2009
E.R visit x2
Wow is all I can say! This past week has been very tiring.
Since Jonathan has gotten the G tube things seem very difficult. At first on the 12th when he got the surgery of course he was in pain. It seem to subside by the 16th monday and then I started him on a blenderized diet consisting of rice milk, coconut milk, sweet potato, chicken, yogurt, flax seed oil, probiotics and pear juice everything organic! Jonathan loved this new "food" he was eating by tube. and when we went to the peds he gained 8 ozs which is really great for jr. because he doesn't usually put on weight that fast. Well on the 20th we had an appt. with the surgeon that did the g tube surgery and we told him that the area looks so red and irritated, his response is it looks irritated so lets wash the area 3 times a day and apply ointment, o.k thats not a problem! Oh ya the best news Jonathans reflux was gone completely after starting this new diet! The next week went great and then on friday night the 27th Jonathan started to reflux a bit but we weren't to concerned but on saturday Justin watched Jonathan and he threw up projectile vomit 4 times in a matter of 2 hours now we're concerned. So I called the peds office and he lost a half pound and everyone thought he was constipated so we went home put in a lovely suppository and gave Jonathan just pedialite by tube and he seemed to do o.k only two more spit up like pukes. Well Sunday was another story he started the day puking projectile but we we're able to keep some pedialite down enough for wet diapers so Sunday was just a pukey mess. Monday morning Jonathan was just in pain and crying non stop so E.R here we come, we went to Beaumont and they thought maybe it was the tube so the resident came down checked it and said he thought it looked o.k then the nurses tried to get blood from Jonathan and let me tell you when I tell a nurse that Jonathan is VERY hard to get blood from and they look at me like I'm crazy it really ticks me off! Oh and of course I was right it took them 3 pokes and all 3 bursted so the last one they were able to get enough for a CBC but even that was pushing it. Well long story short they sent us home! All day monday was a puke fest and we were all exhausted to say the least. Tuesday started out with Jonathan not being able to hold even his meds down so E.R here we go again but this time we went to the University, we got there they were very nice and sincere (our last visit was terrible and I swore we would never be back) I bursted into tears because I didn't know what was wrong with my baby. They took blood and got blood the second time they tried and was able to put in an i.v, Jonathan was very dehydrated to say the least they pumped so much pedialite in him it wasn't funny how could I let my baby get that way! We were admitted to the peds for an overnight stay and on the second day we tried a new formula because I literally scared the heck out of everyone with my blended diet! He excepted the new formula Nutgen and we were able to get him up to his continuous feed but they wanted to keep us one more night just to make sure. He did fine just a couple spit ups but that was fine. We still really don't know why he started with the puking the docs had us a bit worried it was rotovirus because of the watery poop that had the most stinkiest smell in the world but that culture came back negative. They think it could of just been a stomach bug I don't know but Jonathan is now doing good trying to put his weight back on all in all he did lose a bit over a pound which just kills me but oh well he'll put the weight back on. Why can it take just 5 days for him to lose a pound but it takes me months to lose a pound? WE did talk with a nutritionist that did inform us we should have been giving Jonathan about 5 ozs of water on top of his blended diet so I think that my little diet was to heavy on his belly, so I am giving him a break and then will start him back on it because I loved just how happy and energetic he was and the fact that his reflux was gone!
So Jonathan is definitely doing better he even wants to eat a bit more. Daddy feed him some sour cream and he just loved it and yesterday we had chinese and he just wanted more of my pineapple chicken he is so cute! He did try to bit with his gums the chicken I think he was getting tired of sucking all the juice off , he gave me a bit of a scare!
Since Jonathan has gotten the G tube things seem very difficult. At first on the 12th when he got the surgery of course he was in pain. It seem to subside by the 16th monday and then I started him on a blenderized diet consisting of rice milk, coconut milk, sweet potato, chicken, yogurt, flax seed oil, probiotics and pear juice everything organic! Jonathan loved this new "food" he was eating by tube. and when we went to the peds he gained 8 ozs which is really great for jr. because he doesn't usually put on weight that fast. Well on the 20th we had an appt. with the surgeon that did the g tube surgery and we told him that the area looks so red and irritated, his response is it looks irritated so lets wash the area 3 times a day and apply ointment, o.k thats not a problem! Oh ya the best news Jonathans reflux was gone completely after starting this new diet! The next week went great and then on friday night the 27th Jonathan started to reflux a bit but we weren't to concerned but on saturday Justin watched Jonathan and he threw up projectile vomit 4 times in a matter of 2 hours now we're concerned. So I called the peds office and he lost a half pound and everyone thought he was constipated so we went home put in a lovely suppository and gave Jonathan just pedialite by tube and he seemed to do o.k only two more spit up like pukes. Well Sunday was another story he started the day puking projectile but we we're able to keep some pedialite down enough for wet diapers so Sunday was just a pukey mess. Monday morning Jonathan was just in pain and crying non stop so E.R here we come, we went to Beaumont and they thought maybe it was the tube so the resident came down checked it and said he thought it looked o.k then the nurses tried to get blood from Jonathan and let me tell you when I tell a nurse that Jonathan is VERY hard to get blood from and they look at me like I'm crazy it really ticks me off! Oh and of course I was right it took them 3 pokes and all 3 bursted so the last one they were able to get enough for a CBC but even that was pushing it. Well long story short they sent us home! All day monday was a puke fest and we were all exhausted to say the least. Tuesday started out with Jonathan not being able to hold even his meds down so E.R here we go again but this time we went to the University, we got there they were very nice and sincere (our last visit was terrible and I swore we would never be back) I bursted into tears because I didn't know what was wrong with my baby. They took blood and got blood the second time they tried and was able to put in an i.v, Jonathan was very dehydrated to say the least they pumped so much pedialite in him it wasn't funny how could I let my baby get that way! We were admitted to the peds for an overnight stay and on the second day we tried a new formula because I literally scared the heck out of everyone with my blended diet! He excepted the new formula Nutgen and we were able to get him up to his continuous feed but they wanted to keep us one more night just to make sure. He did fine just a couple spit ups but that was fine. We still really don't know why he started with the puking the docs had us a bit worried it was rotovirus because of the watery poop that had the most stinkiest smell in the world but that culture came back negative. They think it could of just been a stomach bug I don't know but Jonathan is now doing good trying to put his weight back on all in all he did lose a bit over a pound which just kills me but oh well he'll put the weight back on. Why can it take just 5 days for him to lose a pound but it takes me months to lose a pound? WE did talk with a nutritionist that did inform us we should have been giving Jonathan about 5 ozs of water on top of his blended diet so I think that my little diet was to heavy on his belly, so I am giving him a break and then will start him back on it because I loved just how happy and energetic he was and the fact that his reflux was gone!
So Jonathan is definitely doing better he even wants to eat a bit more. Daddy feed him some sour cream and he just loved it and yesterday we had chinese and he just wanted more of my pineapple chicken he is so cute! He did try to bit with his gums the chicken I think he was getting tired of sucking all the juice off , he gave me a bit of a scare!
Thursday, February 26, 2009
Hearing aids
Jonathan has recieved his new hearing aids! It took a little bit to convince him to keep them in but is getting better about it everyday, he likes to laugh when I put them in.
He seems to really concentrate when their in but he doesn't babble as soon as we take them out he just babbles up a storm so I think he needs to get used to them.
Jonathan loves his swing however is getting way to big for it his legs hang out but he loves to take his nap in it.
He has also showed interest in wanting his favorite monkey to share his little space next to him. I put it next to him and he just smiles and then leans his little head on him an ends up falling asleep. He's cute what can I say!
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