The Waiting Game...

So we went to Texas Children's Hospital again on January 24th to see the Hematologist. Paxton's neutrophil counts pretty much stayed in the severe range during the 6 weeks of testing for cyclic neutropenia. Most cyclic individuals are low for a short period (5-7 days) and then their counts go back to normal during the remaining 3 weeks of the month. There are some rare cases where someone with cyclic neutropenia stays severe but that is hard to identify as cyclic. So what I am basically telling you is that they do not think Paxton has Cyclic Neutropenia.

So that means more tests. So at the last visit they tested for the anti-neutrophil antibody, and two genetic tests (HAX1 and ELA2). The anti-neutrophil antibody test is to check for just that. In some people, a severe virus can cause their immune system to go haywire and their body can produce an antibody that will attack neutrophils so they cannot completely mature. This is Autoimmune Neutropenia. In most cases, children outgrow this by the age of 5. The problem with this test is there are many false negatives. So if you have a positive it is positive, but if you have a negative, it may be inaccurate and may really be positive.

The genetic tests are checking for mutations on the HAX1 and ELA2 genes. This is checking for congenital forms of neutropenia. I honestly do not know exactly what forms of neutropenia these are linked to because I am scared to death to research it. I know one form is Kostmann's. These will be more severe forms that also have much higher risks associated with them. These are forms that do not go into remission. Hopefully, PLEASE GOD, these come back normal.

So today has been two weeks since the last appointment. We were told about 3 weeks for results. Believe me, I have been checking to see if there are any results back yet. Our next appointment will be in 2 more weeks (Feb 21st). So our new routine if Pax gets a fever of 101, or higher, will be to go the hospital and they will do a blood count and a culture. She will get an antibiotic IV and will be admitted for a minimum of 48 hours to wait and make sure the culture is clear of any bacterial infections.

So as always I beg that you pray for us, and please spread our prayer requests far and wide. I will also try to start posting more happy thoughts! I know you all want to see pictures of our precious Paxton!

Love and God Bless,
K

Paxton – 2 months

Paxton is two months old! My baby girl seems to be growing up so fast. I just look at her and I can’t believe how big she is already. Two months doesn’t seem like a long time to me but I swear so many things have changed in our lives in just two months. Baby Paxton has moved on from her newborn clothing and is now in size 0-3 months and size 1 diapers. She is still calmed by laying on Mommy’s chest and her favorite binky.

Paxton had her 2 month check up today. She had 3 rounds of vaccines given to her (2 shots and one by mouth). Let me tell you she hated those shots but probably not nearly as much as Mommy! She was fussy and had a small fever for a good 36 hours following the shots. But this too we have survived. Her measurements were 11 lbs 15 oz (75%), 23.25” long (80%) and her head circumference was 16” (89%). We have a big baby!!

We are still battling reflux with Paxton. She is still spitting up A LOT and getting the hiccups A LOT. The congestion has gotten a little better, she is only spitting up out her nose about 4-5 times a week instead of multiple times every day, and the choking is much better. She is on prevacid and we have switched to 100% formula because of the reflux. She is now on the regular Enfamil Premium formula and takes about 4 oz per feeding at week 8. We had tried the Enfamil AR for a bit but it caused poop issues for her. The formula has really slowed things down and we are down to one dirty diaper a day. Pax likes to wait for Daddy to come home to do the business. He has to really “talk” it out of her. Here is a picture of Daddy trying to tell her how it’s done. You have to love it!
I have read so many books, blogs and suggestions on baby sleep schedules and routines. We have taken a little from here and there and mixed them together to get what works best for us. We are currently on a 3 hour schedule during the day (5am, 8am, 11 am, 2 pm, 5 pm, 8 pm). I try to get her to do a feed/wake/sleep schedule. Sometimes this works sometimes it doesn’t. When we are out running errands she normally sleeps off and on when she wants. When we are at home we shoot for a 1 to 1.5 hour nap during each 3 hour increment. Paxton has a fussy time everyday from about 5pm to 8pm. I think she is sleepy but fights to stay awake because that is when Daddy is home.

Paxton’s nighttime sleeping has just started getting better at about 8 weeks. She sleeps best in her crib and has to be swaddled like a little baby burrito. She sleeps 8pm-3am(ish) most nights. I can normally sooth her back to sleep until 5am(ish). At around 5-5:30am she will take a bottle. After this feeding I get her back down but she normally will only sleep until 6:30-7:00. I think I need to get black out fabric to sew to her drapes to fix this!

Here is her bedtime routine:

• medicine at 7:30pm
• Mommy gives her a bath or wash up (depending on the day)-She loves bath time!!
• Mommy massages her and gets her dressed for bed
• Daddy gives you your 8:00pm bottle
• Daddy swaddles you and reads you a bedtime story
• down to bed

We have started to increase the amount of tummy time every day and I can tell a huge difference in her neck strength! She is getting so good at holding her head up. It is actually getting harder to burp her because she is constantly trying to lift her head up and move it around. She even had an accidental roll over at about 8 weeks. MeMaw Sharon and Aunt Shelby were there to witness it and I even caught it on camera! We told the pediatrician about this and he was very surprised she rolled over at such a young age. He thought we were saying she rolled off the bed at first! Paxton also started to really smile about 6 weeks. It is seriously the most magical thing I have ever seen. I pray that I remember this sweet toothless baby smile forever. I would box it up and carry it everywhere with me if I could! Along with the smile we have also started to get the drool! That’s okay though I will take them anyway I can get them!

Embrace the camera

I was recently reading a blog that I look at every now and then and then as always it led me to another blog, and then another (this why I have to be careful reading blogs, it can eat up my day) and I came across Emily and her "Embrace the Camera" challenge.

Basically it is a challenge for you to take pictures with your children. What she is saying is that we are mostly behind the camera taking pictures of the babes and we do not get in the pictures ourselves. Mom's always have excuses about the way they look- no make-up, bad hair day, still in my jammies. But when your children are older these are the pictures that they will cherish most! Even though I hate to say it, she is right.

So here is the start of my baby girl Paxton and I embracing the camera!