Wednesday, November 21, 2012

23 months 1 week 5 days

Well we tried to get Jacob to do his Upper GI/Swallow study, He would not drink the contrast barium. At all.. he flat refused. And of course the hospital doing it didnt have a plan b or back up plan to him not drinking it. They said oh well we can drop an NG tube and do it that way, then said well we dont have anyone who knows how to drop it though.. Ahhh so we had to reschedule the test and we are doing it at a different hospital that time, where the radiologist knows how to drop NG tubes and we can do it for sure. The hospital and clinics he goes to are in Syracuse 2 hours from home.. so 4 hour drive was for nothing cause they didnt have that back up plan. Oh well we will try again and we will get our answers somehow. Now we are just getting ready for Thanksgiving, it will be Jacobs very first turkey day that he can eat! That is awesome. Now just to make sure that all food is Jacob safe for dinner. We have started doing really well making sure that all dinner is Jacob safe. That means no dairy at all.. you would be amazed at what all has milk in it. No fruit.. his system cant handle it, its bad. No veggies for him, his system will not digest it. No pumpkin.. I know I know.. pumpkin is a staple on turkey day.. but Jacob is allergic so we have to keep him clear of it. 

On the upside he measured 34 1/2 in long with an 18 3/4cm head I believe they said and 24lb 12.5oz at the doctors office. That is a 1lb increase over 3 days or so. Thanks to the steriods he is on for his latest lung ailment.. hey I will take weight gain however it comes though. Now to just keep him over 24lbs that is the goal.. and 25lb by 2!! He is just a bit over 2 weeks away from his 2nd birthday! Im excited to have a 2 year old though not having a baby in the house anymore will be sad.

Thursday, November 8, 2012

Jacob 22 months, wrapping up the month and new tircks!

We took the kids to Massachusetts for a TAPS event, then we went to see friends and see the ocean. Jacob loved the ocean! And while at a friends house for the first time ever Jacob stood up (after i stood him up) and stayed up for over a full minute! He is such a miracle baby! He was 22.5 months in the video.

Jacob has been sick lately, he came down with Pneumonia after momma had it, momma is very sorry for making the baby sick. He was up to 24lb 2oz shockingly just prior to getting sick soon after he was down to 22lb 15oz. It has been a fight to get him gaining again since the illness but he was 23lb 4oz just two days ago. We will weigh and measure tomorrrow on his 23 month birthday though. We hope to break the 25lb mark by his 2nd birthday but hey we have dreams right.

Jacob will be going back to the GI doc in a few weeks, at this appt we will discuss the next set of tests he will undergo which they think will be an endoscopy and a colonoscopy along with blood tests for celiac. And we will discuss feeding tube placement. At this point it may be what he needs to get to growing and walking if he has enough nutrients and calories in his body, he just cant take enough by mouth during the day to be where he needs to be.

We also hope to see Jacob standing independently all the time and walking by his 2nd birthday! We have big hopes and dreams for our little man. 

He has learned to navigate the stairs and climb, oh my.. He is talking alot now as well. He loves his daddy, doggies and birdies and the water the ocean was a big hit!

We have been adding to the list of foods that he cant have as well. Pumpkin causes a major reaction with his gut and bottom. Veggies make there way through his system whole and never break down, therefore they are not being used for energy or calories. Fruits cause a major bottom rash that bleeds so we had to cut those out. Milk is still a huge no no for him as well, and you would be shocked at what all has milk in it.

But all in all it has been a very good few months besides the bumps and illness's along the way. We have almost come to a close on his 2nd year of life, I cant wait to see what his 3rd year will bring our way!

Friday, October 12, 2012

22 months old

Well time has flown by and once again i havent updated in a little bit but here goes. At 22 months old Jacob is 23lb 7oz and last check still 34 inches long (though i may need to recheck that). He is still not walking or standing on his own, still very "leany" when you hold his hands to try to walk. Not sure if walking is going to happen soon or 6 more months down the road but its all good, he will get there when he is ready and if not we will try to get a dr that will see him and tell us what the reasoning is behind his not walking.   On 25 Oct Jacob will have surgery to remove his Tonsils and Adenoids, we are hoping this surgery will correct the breathing issues and some of the feeding issues. Right now his T&A are so large they almost totally block his airway when he is upset, that is not good. He has never had any infection or illness from it but the airway issue is big enough that we are going forward with the surgery. In doing the x-ray prior to surgery we also found that his Epiglottis is "Omega" shaped, meaning that it is supposed to be flat across and his is shaped in a V which makes it look very thickened on x-ray which led to the ENT getting very worried and calling us back in right away to scope him to make sure he didn't need admitted. Scary day but all is well on that front. Just one more thing that didnt form correctly for him. Jacob is talking more, actually talking alot. He is a very bright little boy. He also has a very healthy temper LOL.. man he can sure throw a fit when he wants to. That is all for now, i will try to update again around 23m or 2 years.

Monday, June 25, 2012

 Jacob 17.5 months, this is how he crawls.

 17.5 months old during our visit to Springfield, Mo

 Jacob 18.5 months, he can pull himself up now to get to toys.. 19lb 11oz
Jacob almost 18m old.. scrawny little guy.. he can set up though.

We are getting ready to do a big move from Colorado to New York, thinking when we get there i will see if there is anything we can do to help Jacob learn how to walk, though i figure he will be walking before to long anyhow. He is bouncing back and forth weight wise from 19-20lbs. We are hoping to get him gaining soon enough as well but man he is a hard kid to get to gain weight.

Thursday, May 24, 2012

17 months update, and big changes coming up.

My Crew of kiddos. Audrianna 10, Tristan 9, Montana 7, Dylan 6, Liberty 3 and Jacob at 17 months.  At Garden of the Gods in Colorado Springs Colorado
                                   Jacob 17m and Daddy having fun at Garden of the Gods 
                           Jacob playing in the tree's 16 months old, In Perryton, Texas. 
                      Jacob playing at the park in Perryton, Texas 16 months. Took a break from the hospital          where his grandpa Charlie was getting ready to lose his battle with cancer the very next day.
17 month 2 week 1 day update.

Well Jacob is doing so many more new things, back in April we spent a few weeks in a hotel in Texas because his daddy's father was dying. While in the hotel Jacob learned how to move his body, he can now do the army low crawl very well, He has started pulling up some on somethings but hasnt attempted to take any steps yet, maybe he will now that i said he isnt.    He is up to 19lb 3.5oz and 31 1/2 inches from the best I could do to measure his wiggly booty. He is getting to be a big boy even though he is still low on the weight end. We are now packing our house up for a PCS move to Ft Drum New York so he will be a NY kiddo soon enough. Lets see how much further he gets before we head that way. He is a sweet baby and has an amazing personality. He can say several words like Daddy, Mommy, Bite, Doggy, Hi, Bye, Dadadoooo(not sure what this one means but he loves it.) And his little sing song one of just syllables. He has a big smile for whoever wants to share one and loves to play peek-a-boo. He also loves to play with and love on his baby doll Graham, who apparently looks to real for some people and the reactions are priceless. Here are some newer photo's of the man of the hour, mommy hero! 

Saturday, February 18, 2012

Just some photos of Jacob

14 months GI update

Well we went to see the GI doc again last Wednesday the 15th. Jacob now weighs 17lb 13oz. The GI doc's have decided to put Jacob on a nutrition drink called Peptamen and a formula called Elecare. We are hoping to get him gaining weight, all the tests they did came back ok so we havent found another underlying condition. All we know is that at this point they would like to see him at, at least, 25lbs.. So we have another check up on 15 March and by then they would be pleased to see him having gained. If we were to magically get him up to 25lbs we would have to get him to gain a total of 7lbs in less than 1 month.. for a child that typically gains a few ounces a month. In other words we need a miracle. Sandy his GI doc/pa says that Dr. Yazdi may very well admit him to the hospital for management and to get him to gain next month if he hasnt gained sufficiently by the next appt. The Peptamen Junior is 250 calories a can, and the Peptamen 1.5 is 375 calories a can. The only downfall is we dont know if our Tricare will cover his special food which runs 170.00 for a case of 24 for the Peptamen Junior 250/Cal and 230.00 for a case of 24 cans of the Peptamen 1.5 375/Cal... To give him 2 cans a day that would be about 2.5 cases a month that we would need which would cost 425.00 to 575.00 a month. It is a high cost to keep him healthy but we wont have a choice. Now just to figure out how to afford that without help if the insurance refuses coverage, that is what we are dealing with at this point. And of course WIC is no help to us.. So this month's update isnt exactly all roses and sunshine but if it helps my son i will do whatever i have to come hell or high water, my children always come first.

Thursday, January 19, 2012

Its been a bit 13 months now

Well it's been a bit since ive updated here but lots have been going on. Just a few days ago Jacob went to see the GI specialist. They have finally labeled him Failure to Thrive. At 13 months Jacob was 18lb 5oz on 12-10, we were happy. Then he got sick croup and throwing up and it was horrid, bye 12-14 he had lost to 17lb 11oz then by the time 12-29 rolled around he was down to 16lb 13.5oz. We decided to make the appt with GI when he saw them on 1-4 he was at 17lb 4oz then once again got sick after having a Barium Enema and threw up all day and was down to 16lb 13.5oz again by 1-13. We are on an upward slope at the moment though and he is back up to 17lb 3oz as of 1-18 now we need him to gain. He is setting up on his own, started doing that round about his 1st birthday he isnt perfect at it but he sure gives it a whirl. He is still not crawling or standing or walking and showing no signs of starting yet.

He has had a rough few months but the smile rarely leaves his face, till he has tummy pain and then man oh man does my happy go lucky little guy get angry. I hate seeing him cry in pain like that and it lasts for hours and hours and there is just nothing we can do but hold him tight and rock him and talk to him till the pain stops. I wish i could take that pain away from him but i just cant.

Here is Jacob his 1st Christmas in the NICU at  2w2d old and his 2nd Christmas 1yr2wks

Jacob at 13 months old just had his very first haircut the other day!

Jacob on 1/14/11 finally leaving the NICU at 36 days old, he was happy can you tell?
and at 13m 10d old on 1/19/12 same carseat, he has grown just a bit hasnt he? From 6lb to 17lb!
Here are some new pictures of my awesome little man!!