updates big and small

Well friends jacob is now 4yr 4mnth old. He is doing amazing despite the issues he fights daily. Since his T&A removal last November
We have gotten so far with his neuro. It was a scary few weeks with a misdiagnose but we have the final verdict.

Jacob has Peril ventricular leukomalacia which is damage to his brain causing loss of white matter. He walks but some days he has trouble due to the brain damage and the cerebral palsy he is very tight on his right side and very low tone on his left which makes for a very noticeable gait disturbance.

Jacob is having issues with his kidney defects add well so we see Tyne urologist next month as well to see if he needs another surgery there.  Hoping not...

At 4y4m jacob weighs a whopping 36lbs and 43 1/2-44 inches tall. He is well into size 5 jeans and 4/5 shirts. Shorts on the other hand he can still wear an 18-24m and a size 10/11 shoe . some shoes have to be a size bigger to fit his SMO braces.

Winter with Jacob

Well we have noticed a big thing this winter since Jacob started to walk. When he gets cold his walking gets alot worse. When he is tired it gets worse. He starts to do this huge side to side wobble thing while walking.  I am not sure that this is something we can correct without some sort of bracing and I think it will come to that sooner than later.  But he can walk, that is the upside. He can walk which we were very unsure if he would ever do.  

Jacob is now 3 years and 2 months old. He is 39 1/2 inches a few weeks back and 30lbs still as of 2 days ago.  That makes for difficult clothing shopping.  He is in a 4T shirt and it fits really well.  Jeans wise he fits a 3T slim as long as the waist cinches up. Shoes are a size 8 finally! His feet took forever to catch up and he has gone from a size 4 to an 8 over the last year.   

I bought Jacob some clothes for summer (you know when it happens in NY)  I got 4T shirts which once again are perfect. I bought 2T shorts thinking they HAVE to fit.. right?? Nope LOL they fell right down.  I have a tiny bit of hope they may fit by summer but that is probably a pipe dream. Its ok.. most of his 18m ones are still hanging around so we will default to those. He even still fits most of his 12m ones as long as they are long enough to look normal.   I will get some new 18m ones soon to supplement the ones that may not have survived the pipes breaking a year ago at our old house.

Otherwise Jacob is doing fantastic. He is so very smart, and slightly a smart alec but its cute at 3.. he talks very well and between that and how tall he is people are always very shocked to hear that he just turned 3, and that he was a preemie.

Jacob is 3 years old!!!!

           Jacob fought the nap and the nap won! He passed out and took a nap while watching tv.

                              Jacob before our christmas family photo's looking super cute

                            My belly button super hero! Jacob in the NICU and at almost 3!

         Jacob with his big siblings at the Greek Peak resort this past weekend, they had a blast.

Happy birthday to my little fighter Jacob who turned 3 whole years old yesterday! We went to Chuck E Cheese for his birthday with his big brother a week ago since we are super busy this week. We did have cake last night again for his special day. 

Jacob is 30lb 6oz I do need to measure him again but he is offically growing into 3t clothes. He loves Jake and the neverland pirates and Mickey Mouse. He is so smart and a little stinker already, I say he is like a sour patch kid now. He is a joy to have around that is for sure...

We are working on getting in with genetics and will hopefully have an appt in the next 6 months, they take a long time to get into. We are working on ENT as well but his referral keeps getting lost so hopefully they will be calling back before to long as well.   Jacob was released from the care of his GI doctor last month after hitting 30lbs and we were thrilled.  We will be seeing Ortho again in another 10-11 months and Neuro again as soon as I remember to call in and make his appt.   I will be setting up a referral for Urology as soon as I can to so that we can get his urinary defects checked out and make sure they dont want to do surgery there as well.

EEG done, now we wait

EEG came back perfect! No seizure activity during the test!


EEG is done. I had to wake Jacob up at 5am but it worked, his EEG was set for 1030 by the time they got him hooked up it was right about 11am. She turned off the tv and the lights and he was out. Took about a half hour to hook him up but he just sat there calmly watching tv the whole time which she measured and drew on his head then cleaned it then applied the goop and wires.. he was amazing. We will know in 7-10 days what the results are. She asked about him jerking in his sleep and I told her he does it alot.. just hope we have some answers soon enough.
                                           Watching Mickey Mouse while she drew the marks

                                                       All wired up and ready to sleep

 All done, she woke him up after about 30m or so then flashed the strobe light for a few minutes then he was unhooked and off for blood work

                                                                    Sleepy but done

2 years 8 months

Haven't updated in quite a few months now so I figured it was time for one.

Jacob is 2y8m now. That is 2y6m adjusted though I rarely adjust his age anymore. Sometimes it makes when he does things not seem quite so late though.

About 3 months ago Jacob finally started to walk, we have been so thrilled because for a long time we were worried he would never do this. He is still a bit unsteady and walks "funny" but he walks and that is all that really matters. 

I finally got in to see the Pedi Neurologist a week ago she has set up several tests for Jacob to see if he does in fact have cerebral palsy. He will have an EEG tomorrow and an MRI that is being scheduled, along with an ultrasound to see if the spot in his spine is a split spine, a form of spina bifida occulta.  He was given rescue meds for seizures so that if he starts to seize again we can get them to stop instead of watching him go through it, thankfully..

I weighed Jacob today and he is now a whopping 29lb 3oz!! He is talking up a storm and such a smart kiddo. I do still need to measure to see how tall he is now but I will try to do that tonight.

He is sprouting up but still a scrawny kiddo so it makes clothes just not fit well. He is still fitting his 12/18m shorts but in pants he is close to outgrowing the 2t for length, very close.. his shirts are 2t/3t.. tall kiddo. 

He will go see the Pedi Ortho doc again in October as well as his Pedi GI for his 6m follow up to see if they like the progress he is making.

All is well in our little world.
                                               This shows just how tall he is now! Look at that boy!

                               Earlier today, he loves to make silly smile faces when I try to take his pic

                      His head is almost to the top of the Britax now, thankful for another harness setting

                                   He was awful proud of his "sandwich" he made at dinner.

                                              Jacob at the beach showing off his new pullup

                                                And Jacob having fun at the baseball park

That is all for now photo overload but its been quite a few months since an update.

27.5 months old

Yes, I still count in months. Hard not to. Time for another update.

Jacob is getting big, well taller and taller anyhow,. His surgery that was scheduled last feb was postponed due to yet another illness, it was supposed to have been done next tuesday but once again it was postponed. Jacob has Pneumonia again and is feeling pretty rough and running high fevers.

Daddy took him to the er and sat with him from 5 am until noon, now thats a good Daddy. Lots of tests were run and iv's put and meds given. They did Xrays and caths and blood work, poor baby. His white count was up so they gave him a different antibiotic to try to get it under control.

Because he has been sick he is losing weight. 3 steps forward 2 steps back, He had made it up to 27lb 11oz. We were thrilled but he was back down to 25lb 10oz as of 6 days ago. I will reweigh him when he wakes up from his nap.

He is still not walking, he can take steps when he wants to but they are really stiff and unsteady, his ankles turn in alot and he seems to be in pain so at this point we are not pushing him to walk until we see Ortho on the 8th of April. We are hoping he walks out of there with some braces so that he can have more stability and his ankles stay up and then hoping he can walk soon, or when he is ready.

Jacob is talking up a storm, he is such a smart little man. He still cant have dairy or fruit but he will eat the heck out of anything else you put in front of him. He just doesnt gain weight from it, that is the problem. Hoping we get a new surgery date and that he will be healthy enough to get it done so we can try to get some more answers as to why he has so much trouble gaining and with losing so much weight.

Well now the fun part!! Pictures!

 Jacob out to dinner for his 2nd Birthday!

 Daddy and Jaker's in the ER last week.. it was a long morning and he was a very sick guy.

 Jacob and his siblings out to Chuck E Cheese for his brothers birthdays last weekend

 We stopped at Fort Leonardwood (Lost in the woods) Mo and took photos at the memorial wall, then got the kids pic really quick.

Jacob this was yesterday 27.5 months old. Very skinny dude but hey his diapers will fit forever. Gotta look at the upside somewhere right?

5 days shy of 26 months.

Jacob will be having an upper Endoscopy and Colonoscopy on 26 Feb. They will be biopsying parts of his GI tract to see if they can get some more answers for us. He was up to 25lb 13oz but had a steady drop for no known reason to 24lb 8oz. As of today he is back up to 25lb even and 36 1/4 in tall. His ENT canceled his Tonsil and Adenoid removal for a few months, he said that with his weight gain/loss issues he doesnt want to take away his ability to eat. So its back to the waiting game. Still trying to get in with Nuero and waiting on an 5 March appt with the Ortho doctor to see what is going on with his ankles and legs. Hating all the waiting this state makes me do to figure out what is going on. Jacob is talking a bit more though, most people dont get to hear it much cause he clams up big time around folks. He also took his first steps (4 of them) about a week and a half ago, since then he has been practicing as much as he can and will take a couple steps before falling down. It is a start though. He is def got standing up alone almost mastered though. Its been a long hard road these last 26 months but its been fun, now to see what he can get into during his 2nd year!