Ok, ok…sorry for the lack of news on my end. I’ve been horrible about keeping our blog updated.
Well we just celebrated Hunter’s 1st birthday. We can’t believe our little guy is a year old. We had a party with friends and family, some of which have never met Hunter because we haven’t been brave enough to bring him to family functions yet. It was a great afternoon, thanks to all of you who joined us and for all of the birthday wishes from those who couldn’t make it! We are truly blessed.
Hunter is a crawling fool and races up and down the hallway as we chase after. He is still a few weeks from walking but we know it’s right around the corner. He pulls himself up on everything and loves to walk around while holding onto your fingers. It is only a matter of time before we are chasing around a full on toddler. He has been busy working on sprouting more teeth. He has cut the two teeth that flank the top two middle front teeth, however those middle front teeth are taking their time coming in. We call him our little vampire baby! :) Seems only appropriate with all the vampire hype these days.
On the medical front, he has continued to thrive. Praise God! He continues to stay healthy and is growing like a weed. We are still on the hunt for some kind of diagnosis or explanation as to what happened or what is causing the immune deficiency. We have sent a blood sample of his and my own blood to a research lab at Stanford. They have found that his T-cell receptor cells (these are the guys that tell certain parts of the immune system where to go and what to do incase of an infection) are low in number and function (but only mildly so), which is good news. Last month we tested his blood to see how the number of T-cells were doing (8 months ago he was nearly lacking all CD4 cells…the guys that fight viruses and fungal infections) and we were pleasantly surprised to find that the number of cells has risen within normal ranges, however we just sent off a blood sample to see how these guys are functioning. We expect to see that although he has a good number of cells those cells are not functioning at all or as well as they should. The research lab at Stanford has also sent a portion of his blood to another lab in Oregon for what’s called STAT5 sequencing. STAT5 is a part of the T-cell receptor that can be examined for abnormalities. If we find out that his STAT5 is abnormal it would give us an explanation as to why his body isn’t manufacturing enough good healthy CD4 cells. However, since this is all based on the research level we are dealing with a diagnosis that would be cutting edge and having that diagnosis would not necessarily change anything regarding his therapy or what we are doing at this point, we would just have another piece to the puzzle. Soooo…we’ll see.
Hunter currently still has his Broviac catheter in his chest providing access for the doctors to give him medicine intravenously and to pull blood when necessary. We have made the decision to remove the external catheter and place an internal port-a-cath instead, this will be placed under the skin below his collarbone and attached to the muscle with 2 tiny sutures to prevent it from moving. This will provide the doctors with the same access they have now and allow us to bathe Hunter on a more consistent basis (he usually only gets a real bath once a week now because we can’t allow the dressing on the external catheter to get wet) and we will no longer have to flush the catheter every night, which will minimize the risk of infection (every time we flush his catheter we risk pushing a bad bug right into his blood stream). With the internal port he will endure a single poke when we go for infusions or blood draws but it will be much less painful then if the nurse were trying to find a vein for the IV and it only needs to be flushed once a month. On August 2nd we are having a consultation with the surgeon that placed the previous catheter to go over the process and what to expect and on that following Friday, August 6th, Hunter will be having the surgery to have his current catheter removed and the new port-a-cath placed. Having the exterior catheter has truly been a blessing keeping him from having to be pricked with a needle for blood draws and infusions, as Hunter continues to grow and develop changing the exterior catheter to a completely internal catheter seems like the best move. Please pray for our family as our little trooper takes another step towards a more normal everyday routine. We continue to pray that he remains a happy, healthy little boy and we truly appreciate all the continued prayers for our little guy.
We are also busy getting ready for baby boy #2. The doctor believes he will be bigger then Hunter. At my doctor’s appointment last Thursday the baby was measuring about 2 1/2 weeks ahead of schedule in size (when she measuring my belly) so next week we are going for an ultrasound to see just how big this little fella is going to be. :) Please continue to say prayers for our soon-to-be newest edition. There is a 50/50 chance that he will also have this genetic abnormality. Good news is we have a better idea of what to look for and we’ll know within the first month what we are dealing with hopefully preventing any of the sickness that Hunter endured.
Baby Boy Knott #2…looks just like Hunter did that that stage. :)
Thanks again and again for your continued prayers for our family.
Love, D
