And it's official!

I shouldn't be surprised, nor should I be upset as I expected this. However, to hear the genetics counselor tell me that the test they did for Zachary came back positive for NS stung me and left me numb. What was I expecting? I don't know. I didn't expect it to leave me feeling so raw and so, well angry.

There was an alteration in his PTPN11 gene in which indicates NS and is also seen in JMML kids. She said since it was suggested we all get echocardiograms we may simply consider getting tested for NS, Jason and I. If we have it or are carriers then we can proceed to have Jonathan tested and further testing in us. If we don't have it then we can eliminate all these other tests for us and Jonathan and know that Zachary's case was more of a "spontaneous mutation". At first I didn't want the blood tests because we are not having more kids but now, I want to know. I want to know how my son got this.

I asked her about all the lung issues he has been having and she said while she can't say it is not linked to NS but she has never heard of it. I told her I did not want to blame everything on NS because I know this could just be Zachary or the time of year but I also didn't want to ignore it because being sick since October 2nd is not normal, in my book! She said we may end up sending him to an immunologist or a pulmonologist. He saw a pulmonologist when he was in the hospital. They did 2 CF (sweat tests) on him as the first one came back "inconclusive" but we never heard more on the repeat test. Not saying it is that but would like to rule that out.

As for the pneumonia, he is acting better but tonight his fever was 100.1 (not too high) and his coughing was of course still there. I can tell the nebulizer is working but he keeps throwing up the meds so we had the pharmacist add some banana flavor to it...he still gagged but kept it down. :-) He sits so patiently for his treatments and laughs and plays.

Now it's time for a fun video...pardon my singing!

The Return of the Sickies!

I was just bragging that we made it 2 weeks in Feb., well really 3, without any trips to the doctor other than a well baby exam. So the day after that well baby exam Zachary starts running a fever. Normal after shots. Wed. he has a low fever and he does on Thursday too. Friday night it jumps to 100.6. Well I know JD had a cough thing the weekend before so it must be that or teething. I let it go. Hard for me not to run to the doctor with him but I told myself it is a virus. Sat. the fever reaches 102 and the cough is getting deep...not his normal Z cough. Sunday we have a repeat of Saturday except he clings to me for 4 hours straight! Monday woke up and no fever.

Monday at noon Chelsea tells him his fever was 99.6. Ok maybe this virus is over. I get home Monday and C tells me that Z took 2 long naps, barely ate lunch and fell asleep playing on the floor. Hm, not my kid I tell you.

Tuesday after a LONG night of crying and fevers I take him into the doctor. She suspects he may have the flu, as several kids at Sally's did but she opted not to do a test simply because Z has Pnuemonia! WTH? The one time I don't rush him in to see the doctor and he is truly truly sick. So let's see, since Oct. he has had bronchitis 2 times, croup, a virus and pnuemonia. GREAT what more are they going to throw at this kid? Why doesn't he get the break he deserves?

We are home all week with him per doctor's orders and he gets the nebulizer every 4 hours and is on some meds. He is puking from the nebulizer doing it's job but I need to time his meds w/that a little better and his meals. So between snot and puke my laundry is piling up again. Jason worked so hard on getting it caught up this weekend and now, I fear it is going back to the 20 loads.

Z is sleeping a lot but prefers to sleep on me. Poor bub. He is so tired and just out of sorts. He lost nearly a pound and it breaks my heart to see how skinny he is. :-(l

In March we will go for all the remainders of his tests and luckily we hit the $2,400 deductible and now we only pay 20%! Look out Dr. Kate b/c after me totally missing this illness, I am taking my kids in EVERY time they sneeze! I will become that Mom...again!

If you can spare any prayers that my little guy eats and gets better soon, I know he would appreciate them. Maybe he can catch a bit of a break when spring arrives! *fingers crossed*

As for Jonathan, he is learning to trace letters and numbers at school and is trying to write his name. He is such a busy guy and is very much in love with his new cousin Trevor! He adores him!

BTW if any of the NS moms that read my blog know if this could be related to NS...the constant colds and stuff, please let me know. I don't seem to see anything so maybe it is just Z.

15 Month Well Baby

Today Zachary had his 15 month well baby check up. He is a on a delayed vaccination schedule due to his chemo last year. Boy, that sounds nice..."last year". Today he got another HiB, DPT, 1st polio and one for a baby pnuemonia. He knew it was coming and my poor boy freaked. He only cried for a few minutes but to see him anticipating the shots was awful.

He is 20lbs (down 1 lb from his 12 month) and is 31". On the NS chart he is 75th for weight and 90th for height but on the normal charts he is 50th for height and less than 5th for weight. He was showing off for Dr. Kate as he usually does. We both feel his soft spot is a little smaller, but not much. The neurosurgeon never called me back so I need to call him again to see how long we watch it or what the next step is.

I am to call Dr. Kate in 6 wks if he is not walking and we will then go for the physical therapy. She told me she thinks Z is growing fine at this point but encouraged me to ask the geneticist about growth hormone therapy and what we will look for to determine if he will need it. I suspect it is a bit of a "wait and see" type of thing.

He will do lots of games with your hands and loves to play peek a boo and say "boo". He tries to put his clothes and shoes on...he knows where it all goes...can say about 10 words and knows that my hair clip goes in your hair. LOL He doesn't stand yet and while I know not to compare, we all know it is hard not to. I was looking at pics of Jonathan at his age and WOW he looked like a little man. He was brushing his teeth and was just so big. I look at my little Zachary and hes still such a baby...well looks like it. Someone said to me, "How old is he, about 8 months?". DOH nope, just a peanut! He is doing things in his own time. He does now pull himself up in his crib and I have to say, it is the sweetest little thing! Of course tonight Jonathan was in his crib w/him and really, they can't fit in there side by side and I'm sure they are WAY over the weight limit but I hate separating them. I talked Jonathan into coming out and know he just loves his baby so much.

I mean really, look at the love here...Zachary cracks me up because I see both his grandpas in him. He's a good mix! And Jonathan, I'd say he looks like Jason, but has my temper.

He's doing good!

Last week my Uncle Joe passed away. He was my Dad's brother in law. He was a wonderful man and loved so deeply by so many. I could see the pain in his children and grand-children's faces and it broke my heart. So many people love him.

Because my dad's family is so large, it seems that, sadly, we only see each other at funerals. I see first cousins that I never met and 2nd and 3rd cousins that I either never met or haven't seen in ages. I have connected with some of them on Facebook and I love that. I am never amazed by the support that my Father's family gives when someone is in our family is in need. It doesn't matter when the last time they saw each other, this huge clan comes together and sticks together. They are there for each other, no questions asked.

Dad's family are huggers too. I love it. No matter how bad your day is, a hug from someone can do wonders...that is if you like hugs!

Since Zachary's birth and him getting sick, so many members of my extended family have reached out to us. And I am reminded of the love when I see them all. They are thinking of us and praying for Zachary and to feel that love and support is incredible. At all the funerals, weddings and reunions I have attended since Zachary's birth and sickness, Uncle Joe's was the first one that I felt I could say, "He's doing good!" and mean it. So many people asked about my sweet Z and it felt good to tell them how good he was doing and to feel confident that my son is in the clear. It's amazing.

Speaking of Z, he is up from his nap and I need go. I will update on our meeting with Parents As Teachers later this week. And his lungs are clear and we suspect his cough is just from his reflux. I will monitor it and if it gets worse, we go back to the doctor.

Have a great day!

Well lookie there...

It's my 100th post and I've got something fun to share:
Yep, he pulled himself up and was fascinated with the buttons.I also got some great fun in the snow pictures:

Sydney and Jonathan are getting ready to go down the hill!
Here is the hill:
Angry baby!


Happy Baby: