The Knott Family

Reaction time!

2010-11-06T22:34:00.001-07:00

To start out I think one of the greatest things that I’ve learned from my Mom (thanks Mom) is that you can’t control what is going to happen or how others are going to react, you can only control how YOU react to a situation. This holds true for lots of situations in life and I think especially in parenting. For example, I can’t control what Hunter is going to do with his food once I put it in front of him…I can however control my reaction when it goes toppling to the floor and he looks up at me waiting with a mischievous grin spread from ear to ear. Hehe…of course I can laugh about it now but in that moment when I’m trying to pull dinner together for Jason and I, Colton is ready to start his dinnertime melt down and Hunter is sitting in his highchair ready to start Food Fight 2010, I have to take a moment…deep breath in and out and remember…he is just doing it to see what kind of reaction it musters. This time I ignore it…say “Uh Oh! Let’s keep our food on our tray” and start to clean it up, all the while the little monster is trying to pull at my hair while I’m on all fours picking little bits of carrot and peas out of the carpet.

What a little turkey, sure he knows he shouldn’t deliberately toss his food over the edge but he simply can’t help the fact that he desperately needs to see what will happen. I think the easiest thing to forget is that he is going to learn from my reaction that “Gee I guess that didn’t work”, and that our consistency in his discipline (in this case ignoring the behavior entirely) is most important. Hunter is always striving for the laughs, he will definitely be a class clown. I will be that parent who has the child that brings home the “disturbs others in class” notated on his report cards. :-)

This testing for a reaction phase IS going to pass. Right?! Well actually, I’m not so naive to believe it will ever really pass, I’m sure it really just morphs as they get older. Maybe by the time Colton gets to this point we’ll be old pros. Maybe…?? Oh poor Hunter, our little guinea pig. :) We love you son!

This blog…

2010-11-06T22:18:00.001-07:00

Well I originally started this blog to not only update our family and friends on the kids and to share pictures but to chronicle our crazy journey into parenthood. As most of you know (those of you who have followed along throughout the past year) I’ve tried to keep everyone up to date on the happenings with Hunter’s medical status. It seems that we have found a good treatment plan for now and not much changes month to month. I’ve decided to take this blog further into our daily life now with Hunter being a curious, loveable, inquisitive, some-times head strong toddler and with Colton just beginning to notice the world around him and share with you some of the things my children are teaching me about myself and the crazy world around us. I want to be able to look back at this blog years from now and see how far we’ve come through the tough stuff and use it to remember the really fantastic times too.

October 2010!

2010-10-27T17:22:00.001-07:00

In September we had Colton tested to see if he had the same genetic anomaly that Hunter has and at this point everything looks great. Colton doesn’t appear to have the same medical issues as Hunter but to be sure we will have him retested at 6 months of age.

Hunter continues to thrive, the medical routine hasn’t changed and we are still waiting to hear if the research lab at Stanford finds anything. At this point they potentially could give us a “what” but it wouldn’t necessarily mean we would change Hunter’s treatment because the “what” would be so new and cutting edge to the medical community. We are optimistic that we will at some point at least have a name for Hunter’s uniqueness. We also sent off Colton’s, Jason’s and my blood for analysis to see if our blood might hold some answers for the scientists looking at Hunter’s case.

We are getting ready for Halloween and can’t wait! Hunter is going to be a Monkey! And Colton will be a bat! I will post pictures. Promise!

We just spent the weekend up in SCV and visited Lombardi’s Ranch! Here are some cute pics from our visit:

Colton James Knott!

2010-10-27T17:15:00.001-07:00

All is well at the Knott homestead. Yet again it’s been too long between posts.

Colton James Knott arrived on August 19th via c-section (he really didn’t want to come out) at 6:32 pm, weighing 9 lbs. 5 oz. and 20 inches long. After spending a few days in the hospital we were ready to come home. Since then we have fallen into a pretty good routine. Hunter is an amazing big brother and much more helpful then I anticipated he would be at this age. Woohoo!! :)

Colton James Knott

Proud Mama & Dada

Hunter and Colton!

Another Overdue Update!

2010-07-20T16:35:00.001-07:00

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

Spring has sprung!

2010-03-22T17:00:00.001-07:00

Well we don’t have much news on the medical front for Hunter. He continues to do very well and at this point the doctors are pretty much in wait-and-see mode with Hunter. At least we know what we are dealing with (without knowing how long it may last…he may outgrow this deficiency in his C4 receptors and he may not, time will tell) and the current regime of antibiotics seem to be working.

Hunter is now 8 months old…soon too be 9 MONTHS! I know I say this a LOT but where did the time go!? :) He began crawling on Friday and has been going non-stop ever since. We definitely have our hands full!

Jason and I are excited to also announce that we are expecting the arrival of another son on August 23rd. This surprise was definitely that…a surprise. :) We are very thankful that God has blessed us with another baby and we can’t wait for Hunter to have a little brother. The Lord works in mysterious ways and if we haven’t learned anything else in this past year with Hunter it is that God has a plan and ultimately he is in control. So a new chapter begins in our lives and our family of 3 is about to become 4. :)

Videos

2010-02-17T12:10:00.001-08:00

I have finally figured out how to put videos on the blog…we have been doing a lot of these lately. Oh how he cracks me up!!

Hunter laughing

Overdue Update

2010-02-17T11:34:00.001-08:00

This is an overdue update. My apologies for not keeping up with all of you.

Hunter continues to thrive, I can’t believe it but he is 7 months old. I know I say this every time I write but where did the last 7 months go? He continues to do well with the current medication regime we are on (Bactrum 2x a day every Monday, Wednesday and Friday and IVIG once a month). We are currently trying to keep him off the Neupogen (the IV medication that stimulates his white blood cell growth). Ideally we would like to see his neutrophil count stay somewhere between 500-1500, currently he is in the 1000’s. The neutrophils are white blood cells that help the body fight bacteria. So far Hunter has remained healthy since leaving the hospital on 10/28/09, so we are taking it slow and continue to have his blood pulled and counts taken every two weeks. Last Monday Hunter underwent a bone marrow aspiration and biopsy, the doctors felt it was necessary to check his bone marrow factories to make sure that there was nothing affecting his body’s creation of cells. So far the preliminary results have come back normal but we are still waiting on the genetic side of the testing, we hope to get those results sometime next week. The doctors confirmed that they do not believe we will find anything abnormal but it’s another test we can do to rule things out.

Last month we pulled blood for 2 more tests that could potentially give us some more answers. First we are waiting on the test results for a more in-depth TREC analysis which will take a further look into where Hunter’s CD4 T-Cells are being made, we hope that it will possibly tell us why his body isn’t manufacturing the normal amount of cells. We also pulled blood for a test to see if Hunter has Hyper IGE syndrome, the doctors don’t believe that he really fits the symptoms but there is enough evidence to pursue taking the blood to check. If he does have this syndrome it won’t necessarily change anything that we are currently doing but we will have a more definitive diagnosis.

In other news, Hunter has officially become the rolling over master! He rolls from one side of his play mat to the other with almost no effort, it’s like he has been rolling over all his life. :) We are working on sitting up now and it surprises me daily how quickly he is mastering that as well. It makes me really happy to see him exploring his world and to watch him learn. He has also sprouted his 2 front bottom teeth and the top front teeth are sure to follow very soon. We keep attempting to snap a picture of the toothy smile but have not yet captured it, as soon as I do I’ll be sure to post it.

Thank you all for your continued thoughts and prayers, your support has been truly a blessing and I absolutely believe Hunter continues to do so well because of God’s grace and all of you. Thank you, thank you, thank you!

2010: A New Year

2010-01-13T13:47:00.001-08:00

We had a fantastic Christmas and New Year while visiting my family in Idaho. I not-so-secretly wished for snow that never really came. Last year we got so much snow it was a bit crazy that we really only got 3 or so inches this year during our visit. Oh well, there is always next year. ;o)

Hunter is 6 months old. I can’t believe it, where have the past few months gone? I can’t believe it’s already January! Wow, time sure does fly! Hunter has started eating solid foods. Yea! Rice cereal and Barley have been well tolerated, we started yellow squash for lunch today. He LOVED it and I must say it is soo much easier to clean up then the sticky cereals. :)

We really don’t have much to report on as far as the medical side goes. The doctors are still puzzled. Fortunately, Hunter continues to do well. We are continuing with the IVIG treatments on a monthly basis and the antibiotic regime hasn’t changed. The thymus test that we pulled blood for right before the holidays came back normal so back to the drawing board. Our plan is to have Hunter receive a tetanus booster immunization and then retest his T-cell function in about a month or so to see if there is any change in his helper cells response.

Thanksgiving

2009-12-04T16:57:00.001-08:00

We spent a great Thanksgiving with my sister, Alanna, and her boyfriend, Derek. It was our first major outing with Hunter with the exception of visiting the doctors.

GOBBLE, GOBBLE!

Skype-ing with the Grandparents!

No more photos please.

It was a major success and dinner was fantastic. It was my sister’s first Thanksgiving that she put on all by herself and the turkey turned out perfect. Thanks Aunt Alanna!

Another Update…Finally!

2009-12-04T16:45:00.001-08:00

Sorry for the delay in updating you all. Things have been going really well for us. Hunter continues to stay healthy (Praise God!). We continue to see the doctor’s every week and have continued to give Hunter the prophylactic antibiotics and the monthly IVIG treatments.

Helping Mom with laundry!

Since our last update we have received the follow up T-Cell Study results that the doctors wanted to run to compare to the previous results we had gotten when Hunter was very sick. We have found that Hunter does have T-Cells (YEA!) but he is on the low end of normal. After testing the function of these T-cells we have found that the cells that he does have aren’t functioning at all (BOO!). They don’t respond to bacteria, fungus or viruses which is not good. Basically, when you get sick your T-Cells are the fighters that begin to combat the infection you are fighting. As your body comes in contact with new bugs your immune system creates antibodies to help the T-Cells fight of the infection should you encounter the same bug later. Hunter has the T-Cells but they just won’t get off their butts and do their job, so that is our new avenue of searching. They even tested his T-Cells against the CMV and the pneumonia that he had when we were in the hospital for all those weeks and they didn’t respond to those bugs either. So we are having his blood drawn weekly to make sure he doesn’t get re-infected.

So happy!

This week we sent off another blood sample to test the function of Hunter’s thymus. The thymus is an organ where your T-Cells go to mature and activate so they can fight off infection. There was some concern because Hunter’s thymus was small on the chest x-rays they took while we were at the hospital and normally the thymus is very large in babies and shrinks as we mature. Knowing if his thymus is functioning properly would be a huge piece of the puzzle.

So our search continues for a proper diagnosis. Slow and steady wins the race…right? I’m definitely still working on that patience thing but God has given me peace in knowing that Hunter is healthy right now and we are enjoying every healthy day we have at home.

Love,

The Signal Article

2009-11-16T12:52:00.000-08:00

A newspaper back in Santa Clarita has published an article about us, you can find it at the following link:

"http://www.the-signal.com/news/article/20760/"

4 Months Old!

2009-11-12T18:50:00.001-08:00

I can hardly believe how quickly the past 4 months have flown by. It seems like a blink of an eye and at the same time I think back over the events from the past few months and it seems like a lifetime. We’re so incredibly thankful to have Hunter at home with us today. My eyes well up with tears just thinking about the journey we have been through in these few short months. It is surreal being home with him now. By the way where the heck did October go? If you find it please send it my way. ;)

4 MONTHS OLD!!!

Hunter is continuing to thrive at home. Praise God! At this point we are still waiting on further test results. (Yes still…) The doctors pulled more blood to do a follow up T-cell study on Hunter now that he is healthy to compare these new results to the results from when he was really sick. Once we get those test results we will determine the next step in his future care.

This week I took Hunter back to CHOC for an IVIG treatment. This is a very expensive synthetic medication (blood derivative) that is giving him part of the fighter cells that he is lacking. The good news is this drug seems to be helping him stay healthy. Since we are seeing good results with the IVIG, Hunter will receive an infusion every 4 weeks for at least the next 2-3 years. Hunter is extremely patient as this infusion takes 4 hours to administer through his broviac. Also, yesterday was his last dose of his at home IV CMV anti-viral medicine. YEA! We will continue with the at home doses of his IV Nuepogen and the oral Bactrum 3x a week, this combination seems to be working really well.

Thank you so much for continuing to send your love and prayers our direction. Our fight is far from over but in the meantime we are eating up our little guy and loving every healthy moment we have together!

With LOTS of love,

Halloween 2009

2009-11-04T21:48:00.001-08:00

More Waiting…

2009-11-04T21:42:00.001-08:00

Yesterday’s doctors appointment went well. Not well enough that we have any more answers but well enough that Hunter is still doing great. He continues to stay healthy and that is our main goal.

Jason and I have been going to great lengths to make sure he stays that way and so far (one week in) we have been successful. We continue to give Hunter his daily meds and they seem to be working. We haven’t gone out with Hunter and will continue to keep him indoors and away from everyone without the flu shots.

We will keep you posted as we CONTINUE to wait on test results. (I’m still working on the patience thing…I know that is part of the lesson I’m supposed to be learning in all of this) :) Thank you all for your continued prayers and support.

Love,

“Help Heal Hunter” Donation Boxes are Here!

2009-10-30T22:37:00.001-07:00

CALLING ALL VOLUNTEERS! We have "Help Heal Hunter" donation boxes that we would like to set-up in places of business that you frequent on a regular basis. If you are interested in "adopting" a box (or 2) please let me know.

Home Sweet Home!

2009-10-30T22:00:00.001-07:00

Well we made it home! Woohoo! On Wednesday we were discharged from the hospital. So far so good. :o) We are soooo incredibly happy to be home even if it is for only a short time. Yesterday I had a visit with our home nurse and she gave me lessons on how to administer Hunter’s IV meds. Today I did it all on my own and it was a complete success. I’m so thankful that we have been given the opportunity to do his meds from home so that we don’t have to be at the hospital.

We will continue with his IV meds for the next 3 weeks while we wait for the rest of the test results that we have pending from Cincinnati. Next Tuesday we will head back to Children’s Hospital to have more labs drawn, basically to check how he is doing with his WBC and neutrophil levels, and to review any test results that have come back. If any of the test results come back positive then we will have a diagnosis and we can start planning the next leg of our journey.

We don’t know how long we will be home before we head back for Hunter’s transplant but we are really enjoying every minute we have at home. If we take nothing else away from this entire experience we have definitely learned to love and savor each day we have at home together.

Thank you all for your continued support and prayers. We love you!

Patience Truly is a Virtue

2009-10-26T16:11:00.001-07:00

Thankfully Hunter is doing much better. We spent the weekend just hanging out, Hunter was off all medication and we were able to take him off the monitors for most of the day hooking him back up at night when he went to bed. It has been really nice to have our "real" boy back or as we affectionately have been calling him "Wireless Hunter". Today we are starting him back up on the Bactrum, which he will be getting twice a day every Monday, Tuesday and Wednesday for the next 3 years. Fingers crossed he doesn't have an allergic reaction.

Sitting in his Bumbo!

Unfortunately, we do not have a diagnosis yet. Before all of this I would have claimed to be a pretty patient person. Oh boy have I learned my lesson. I take it back...now I say, "I'm a pretty patient person, UNLESS we are waiting on a diagnosis for my son's illness". The lab in Cincinnati is STILL working on the blood work that we sent them back on October 5th. We had hoped to have the test results back by the end of the week last week but they’re now saying it takes a month to process the genetic tests. We are currently looking at the X-link immune deficiencies which means that he would have inherited the immune deficiency from the chromosomal X he got from me (boys get an X from mom and a Y from dad; girls get X from mom and an X from dad). This is the most probable diagnosis because of my "slight" immune deficiency. We will continue to keep you posted as we get those test results back. It is possible that he doesn't have the X-linked immune deficiency in which case we would need to pull more blood and test for other options...which again would put us waiting for another month without a diagnosis.

Holding his head up (with the help of his Boppy)

In the meantime, because Hunter is doing so much better, we are trying to get the green light to head home while we wait. If Hunter continues to do well and has no trouble with the Bactrum later today then we will (hopefully) go home on Wednesday. Both Jason and I will be trained on using an IV pump once we are home so that we can continue to give Hunter the Gancyclovir that he must continue to have for the next 3 weeks (Monday thru Friday) and the Bactrum. I will also bring Hunter back to the outpatient clinic once a week for blood tests and doctor consults. Once we have a diagnosis then we can begin to plan for our return trip back to the hospital and the transplant. Per the transplant coordinator there are good matches for both the bone marrow donors and the cord blood donors for Hunter. We won't know which direction we are going to go with the donors until we have a diagnosis but the good news is that we have options. The plan will be to proceed full steam ahead once we have a diagnosis while Hunter is well so that he will have the best chance with the transplant. So even though we are going home our stay there will be short lived, probably just long enough to get back into a regular routine, either way we'll take it! :)
Thank you all for your love, support, kind thoughts and prayers. God has blessed us with such incredible family and friends and of course one incredible little boy!
Love,
D

4 Weeks at the Hospital

2009-10-21T15:07:00.001-07:00

We have gotten word that the preliminary labs on the spinal tap and the CT Scan that we took yesterday have come back normal. Praise God!! The doctors are pretty certain that he does not have meningitis but we will still wait for the bacteria cultures to come back (hopefully before the weekend) before they give the official word.

Hunter’s fontanel (soft spot) appears to have gone back to normal and the hives that he had all over his torso are also starting to disappear. We believe that he had an allergic reaction to the prophylactic Fluconazol. At this point we have taken him off the Fluconazol and the Bactrum hoping to clear up the rest of the rash. The plan will be to start up the Bactrum again in a few days as a prophylactic antibiotic to hopefully prevent him from getting another round of the pneumonia. The doctors thought that by giving him a break from these 2 drugs we will be able to determine if he had the allergic reaction to the Bactrum (not very likely but still worth ruling out) or the Fluconazol. If when we start up the Bactrum again later this week and he doesn’t have a reaction then we’ll know.

He is still continuing to get breathing treatments every 6 hours and is still receiving the anti-viral Gancylovir for the CMV once a day. The good news on the CMV is that his levels as of Monday were down to only 413 organisms; this is down from the 9,800 organisms they found when we first began treating the virus 2 weeks ago. Hunter also continues to maintain his own wbc and neutrophils levels (without any drug assistance) so that his little body can fight off any new potential bugs.

Well today is officially 4 full weeks in the hospital…at one ICU or another. :o) We are still in the OICU (Oncology ICU) at CHOC (Children’s Hospital of Orange County). My Mom has said in the past “A house doesn’t make a home, the family and the love inside that house makes it a home”. I think we are becoming masters at creating our home wherever we might land from day to day. Thank you all for your continued thoughts and prayers.

Love,

-D

What a Day!

2009-10-20T15:00:00.000-07:00

Yesterday, Hunter started acting a little funny. He was fussy off and on for most of the day which is not normal for him. He is usually one happy little guy. He didn’t sleep well at all, I was up with him most the night when usually he is such a good sleeper. Yesterday I noticed that his fontanel (the soft spot on the top of his head) was bulging. Normally it is flat and pretty smooth. The doctors checked him out and we decided to just keep an eye on him because for the most part at that point he didn’t have any other symptoms.

Early this morning, during Hunter’s feeding, I noticed little red bumps all over his abdomen. This worried me, so I again asked the doctors to look at it. Because of the combination of symptoms, the doctors were concerned that he might have contracted meningitis. They also wanted to eliminate the possibility of any abnormal brain fluid because of the bulging fontanel. So, the doctors sent Hunter to get a CT Scan of his head to check his brain and fluid levels. Other than being a little fussy, he did really good during the CT Scan.

Right when he got back from his CT Scan, they did a spinal tap to test his spinal fluid for meningitis. I had to leave the room. I don’t think I could have seen him go through that, but Jason stayed in the room to make sure that everything went well. Hunter was a trooper though the whole thing, and all of the tests have been ordered. Let’s hope that they don’t loose any of his spinal fluid vials; I don’t want him to go through that again.

Since his spinal tap we noticed that the red bumps have turned into red splotches and have spread all over his torso. The doctors think it might be an allergic reaction to one of the medications so they gave him some Benadryl to see if it goes away. We are just waiting to see.

After such a big day, and some pain meds from the spinal tap, Hunter was really tired. After eating, he fell right asleep and looked so peaceful. I had to take a picture to share with you guys.

Just when it seems like he is doing better and we are on the road to recovery we are sent another curve ball. I hope for Hunter’s sake (and ours!) that all of this is over soon.

Love
-D

A Good Weekend…

2009-10-19T00:13:00.001-07:00

We had a rather uneventful weekend which was really nice for a change. This week should be another busy one. Hopefully we will get some test results back on Hunter’s immune deficiency diagnosis by the end of the week. All the blood tests that we sent off to Cincinnati 2 weeks ago should be complete and we will officially have a diagnosis. Once the doctor’s have the diagnosis then we can begin to create a plan of attack.

Bath time! He’s not too sure about it! :o)

Thankfully, Hunter is continuing to do better. He only has 4 more days of the high dose Bactrum for his Pnuemocystis pneumonia, once that is complete he will go on prophylactic Bactrum to hopefully prevent any further bacterial infections as well as Fluconazole to prevent any fungal infections. Today was his last dose of the steroids and he finished his last dose of the Oxicillin for his staph infection earlier this week. YEA! Our last major bug to fight off is the CMV, the Ganciclovir dosage that he was previously on was lowered to only once a day in the hopes that it would allow his white blood cell count to come back up. We have been closely monitoring his white blood cell count (wbc) and his neutrophils levels because without those fighter cells the medications don’t work. A normal white blood cell count for a healthy baby would be in the range of 5-10.9 (or 5,000-10,900), on Friday Hunter was at 4.7 which was too low so they gave him a very small dose of a medicine yesterday to promote cell growth in his bone marrow. This morning his wbc was at 20! It is a very good sign that he responds so well to the medicine and with such a small dosage. When he goes to transplant this medicine will come in very handy to help the engraftment of the new stem cells.

All in all it looks like we are continuing to get the best of this round of bugs. We still don’t have any idea when we will be going home and until we get the diagnosis we don’t know if we will go home at all before they do the bone marrow transplant. Please continue to keep us in your thoughts and prayers as we go into this next week and I will continue to keep you posted as the test results come in.
Thank you all!
<3 D

3 Months old!

2009-10-12T20:13:00.001-07:00

Hunter is 3 months today! YEA!! I can’t believe how big he has gotten in just these 3 short (minus the past 2 ½ weeks) months. A quick update on our status…Hunter was transferred to the big CHOC (Children’s Hospital of Orange County) last Monday. We were admitted into the PICU and stayed there for 4 days. Hunter was taken off the ventilator on Wednesday afternoon…he has since been doing really well. The worst of this was seeing him on the ventilator and not being able to cuddle and snuggle him. Thankfully that is behind us. When he came off the ventilator he was only on ½ liter of O2…they slowly weaned him and yesterday he had his nose canula removed and his feeding tube too! He is very slowly improving and is continuing to smile and flirt with all the nurses.

Hunter with "Grammy" Kim

On Friday we were moved down to the OICU (Oncology ICU) where we continue to be in wait mode as we try and find a diagnosis to the underlying immune deficiency that started this all. If they can properly diagnosis the immune deficiency a possible treatment would be a bone marrow transplant. Hunter will more than likely need one of these and the possibility of this scares me to death. Both Jason and I have had our HLA typing done and we are waiting to hear if we are a potential match, if we aren’t then we would have to rely on a good match from a donor somewhere out there. Of course we will continue to keep you all posted. We hope to get some test results back later this week. Please continue to keep us in your prayers as this seems to be only the beginning of a long journey ahead.

LOVE…D

The longest 2 1/2 weeks of our lives...

2009-10-12T18:22:00.000-07:00

Well it has been a crazy few weeks…where do I start. On Tuesday night September 23rd I noticed Hunter’s chest was “caving in” when he breathed and that he was making a grunting noise. Later that night he threw up on me while I was nursing him…I made him an appointment at the pediatricians office first thing in the morning. On Wednesday we saw our pediatrician, she determined that he was having trouble breathing so we gave him 2 breathing treatments and checked his oxygen levels, the breathing treatments weren’t working so she sent us to the ER. We were admitted to the PICU on the 23rd at the Children’s Hospital of Orange County at Mission Hospital. Here are our posts from Facebook…hang in here with me as I get our blog up to speed…

Jason Knott September 24 at 10:08pm:

Thank you everyone for your thoughts and prayers. Hunter is still in the ICU, but he is showing very slight signs of recovery. He ate a full bottle this afternoon, and he is sleeping more now. Unfortunately, the doctors still do not know what the cause of this is other than some virus. He is still on an IV and oxygen and we have not been able to successfully take him off those support systems yet.
Dee and I are doing well. We are just worried and wish the doctors could diagnose the problem. We are here taking shifts watching him. My mom is here helping us with him and watching after the animals at home. We wish we could have more visitors but the doctors want as little exposure as possible.to successfully take him off those support systems yet.Dee and I are doing well. We are just worried and wish the doctors could diagnose the problem. We are here taking shifts watching him. My mom is here helping us with him and watching after the animals at home. We wish we could have more visitors, but the doctors want as little exposure as possible.

He is still smiling even though he is having trouble breathing...

Deanna Knott September 25 at 11:51am:

The doctor decided that Hunter can be moved out of the ICU to the pediatric wing. He is still on oxygen and IV, but he doesn't need to be monitored as closely. So that's a good sign. They think his breathing is improving. We are going to do another x-ray tomorrow to see if his lungs are improving. He said that we would probably be here for another 2-3 days.

We put socks on his hands so that he wouldn't pull out his canula and feeding tube.

Deanna Knott September 26 at 9:40pm:

Just a quick update...We have moved to the Pediatrics wing of the Children's Hospital and out of ICU this evening. Hunter had a good dinner and is sleeping soundly at the moment. YEA!!! He seems to be improving slowly, the x-ray that we did this morning is still showing his lungs are patchy but slowly improving. The plan is to keep doing what we are doing, monitoring his O2 and giving him breathing treatments, Monday we will do another x-ray to see what his lungs look like.
Through all of this Hunter has continued to be his charming self, smiling and cooing at all the nurses so it is encouraging that even though he is struggling to breathe normally he isn’t in any real pain. I really am a lucky Mom to have such an awesome little boy!
Thank you all for your thoughts and prayers, we love you all!are doing, monitoring his O2 and giving him breathing treatments, Monday we will do another x-ray to see what his lungs look like. Through all of this Hunter has continued to be his charming self, smiling and cooing at all the nurses so it is encouraging that even though he is struggling to breathe normal he isn't in any real pain. I really am a lucky Mom to have such an awesome little boy! Thank you all for your thoughts and prayers, we love you all!

Deanna Knott September 29 at 11:37pm:

Well tonight is night 7...Hunter is doing better. We have since moved back to the PICU because of his labored breathing. Each day he seems to be improving. We are still trying to figure out what exactly is going on. I have an immune deficiency that I have mostly grown out of and our current thoughts are that Hunter may also have the same or something similar...it would basically make him more susceptible to infections of all types making him sicker than a normal kid and would cause him to stay sick longer.
Tomorrow is a big day he is going to undergo a bronchoscopy biopsy which should help us either determine that he does indeed have an immune deficiency helping us diagnose the infection that he is battling (so we can treat it properly) or rule it out entirely which will then confirm that he does just have a viral infection of some sort (the doctors believe it to be pneumonia or brocholiitis). Yesterday we had a visit from the cardiologist, he came and did an ultrasound in our room and told us step by step what he was looking at and confirmed the results from the first ultrasound...Hunter's heart is fine! Praise God!!!! Little by little we are ruling stuff in and out and hopefully...HOPEFULLY...the results of the biopsy tomorrow (we hope to have all the results back by the end of the day Thursday) will get us that much closer.
Thank you all for your kind thoughts and prayers, it has helped us more then we can ever express. If you could definitely spread the word about the biopsy (scheduled for tomorrow at Noon, he is going into the OR and they are putting him under general anesthetics) I would especially appreciate it as I'm nervous for everything to go as planned. We are looking forward to getting more answers in the next few days and we will continue to keep you updated as best we can. We love you all!! THANK YOU, THANK YOU, THANK YOU!!!!!

Deanna Knott September 30 at 4:19pm:

Thank you all for your prayers, we definitely felt the love all around us.
We are officially in wait mode. We have done all the tests we can do until some of the results come back. The bronchoscopy went well this afternoon, we are all exhausted from it all but glad it's done and over with. Hunter is quite the trooper! Thank you all for your prayers, we definitely felt the love all around us.

Deanna Knott October 4 at 9:36pm:

Sorry it has been so long since our last update. We want to thank everyone for their thoughts and prayers. Hunter has gone though quite a bit this past week. They have done several tests and found out that he has pneumonia and another small infection in his lungs. With these tests that have also determined that he has an immune deficiency; however, they are still testing to find the exact diagnosis. After being poked way too many times for blood tests and IVs, we decided it would be best to have a broviac catheter placed in his chest. This will give the medical staff the ability to draw blood and administer treatments without having to poke him again. This will also be helpful because he will also need to have monthly treatments to boost his immune system.
Hunter went to get the broviac catheter this morning and was placed under general anesthesia again. During this procedure he was intubated, which means they put a breathing tube down his throat and into his chest and place him on a ventilator during the procedure. The general anesthesia was harsh on his little body and we want not able to be extubated, so he will continue to be on the ventilator for the next couple of days. This has been especially hard on us because he needs to be sedated to keep him comfortable and we can’t hold and cuddle him. The doctors anticipate our stay her will continue for the next couple of weeks while they make sure the treatments for his ailments are working. As we find out more from the doctors we will keep you updated. Again, thank you for all your thoughts and prayers.

The longest 3 1/2 days of our lives...seeing your baby on a ventilator is something no parent should have to witness. My heart goes out to the families that have endured that much longer then us.

2 Months!

2009-09-18T22:16:00.000-07:00

Can you believe it?? Hunter is 2 months old (10 weeks on Sunday), well I can't believe it! To say that he is growing like a weed is an understatement! We had his 2 month check up last Friday, he now weighs 12lbs 6 1/2oz and is 23 3/4inches long. He is in the 75% for his weight, 80% for his height, and 50% for his head circumference. Basically a big boy! :) We are so proud.

We have been going to Gymboree since he was 7 weeks and Hunter absolutely LOVES Gymbo. He is holding his head up when we put him in a seated position and is tracking movement with his eyes. He is smiling more and more and we just can't wait for that first real belly shaking laugh, we know it's right around the corner!

Hunter @ 2 months!!!

At his check up he had his first round of shots, we had Dad come with us because I couldn't handle being by his side to comfort him while the nurse gave him his shots. I stood behind Dad and waited for it to be over, Hunter and I comforted each other after the shots had been administered. Oh did he hate it! Jason and I have decided that he'll take Hunter for all his shots from here on out. The nurse asked how Mom was doing and handed me a tissue to wipe up my tears....oh it was terrible. I feel good about Jason taking him for "those" doctor appointments. :) I don't want Hunter to dread going knowing that I'm dreading it.

Back to WORK...blech!

2009-09-18T21:55:00.000-07:00

Well this week was my first week back to work. It was a busy one that is for sure. Thank goodness for family! My Dad helped watch Hunter on Monday and then Kim came out to visit for the rest of the week. Now I'm only working part time from home for 4 hours everyday (9-1) but let me tell you those hours seem to fly by and creep by all at the same time. It is a delicate balance...I want so desperately to devote my time evenly to both, trying to keep work under control and not ignore Hunter and on the flip side I want to spend all my time playing with Hunter, singing and laughing while maintaining work requests. I'm trying to find an even balance between the two.

I'm incredibly grateful for the opportunity to work this fantastic schedule so that I can stay home with our little guy AND bring home a little cash in the process but I don't know how people go back to work full time and leave their little one in someone else's care. I felt bad putting Hunter in his play chair or his swing, having him play alone, while I read through email and returned phone calls...I know this is the best of both worlds but it's still difficult and at the same time I enjoyed getting back into the thick of it all again, I would even admit that I missed the buzz of work and that sense of accomplishment that comes at the end of the day knowing that I crossed things off my "to-do" list.

I was so grateful to have my MIL here to help me figure a good schedule out and I think next week will go well. Thanks Kim! Hunter really enjoyed spending time with his Grammy!!!! :)

Almost 6 weeks!

2009-08-21T13:47:00.000-07:00

It's been 5 weeks and 5 days of life with Hunter! We have had many visitors and lots of help from Family and Friends. I know that I don't say it enough...thank you everyone!

Hunter is doing really fantastic, he is growing so quickly it blows my mind. I believe he is roughly on the high side of 10 lbs now and he might actually be bigger then that. He has begun to coo and smile when we talk to him. It of course cracks us up and we are constantly trying to find new ways to get a smile out of him.

We have gotten into a pretty good routine which definitely changes at his whim but I'm proud to say we are headed in the right direction. YEA!! I have to confess that being a Mommy has definitely been more difficult then I imagined. More then anything I worry far too much, I know this about myself but I just can't help it. I've been attempting to not worry as much about our little guy but I imagine this is the Mommy curse. When Jay comes home and he cuddles Hunter he says "I wonder what we've done today to screw you up for tomorrow?" I think we should make this the new parents motto.

Hunter @ 1 month old!!!

Hunter's Arrival!!

2009-07-20T21:18:00.001-07:00

I know this post is a long time coming (a whole WEEK)! We have been adjusting to our newest addition to our family and catching up on some much needed rest. :)

Here is how it all happened: Saturday night Deanna, Jim, Jason and I had just got home from eating dinner at Northwoods Inn and were settling in to watch a movie. Before the movie started I went for a quick potty break and my water broke. We called the doctor and went to the hospital at 6:30 pm. We were admitted into the hospital and called family and friends. My sister Alanna and her boyfriend Derek, Jason's mother Kim, Jim and Deanna and just by fantastic chance my Mom joined us at the hospital. We labored through the night and everyone tried to get some rest, at about 10 am on Sunday morning I was ready to push. After 2 1/2 hours of intense pushing our son Hunter Warner Knott joined our family on Sunday, July 12th @ 12:36 pm, weighing 8 lbs 11 oz and 21 1/2 inches long. July 12th also happened to be our 6 year anniversary. What a gift!!!!

Our entire experience thus far has been absolutely incredible. I have trouble finding the words to explain how amazing it feels to be the Mother of this tiny little boy. Both Jason and I just sit and stare at him. He is perfect in every way from the top of his little round head all the way down to his really long toes. I know most of you have heard from your parents that you won't understand how it feels until you are a parent yourself...now I know that I have really only been a parent for a little over a week but I totally get it and it blows my mind. I can't believe that God has trusted us enough to raise this little guy and completely blessed to be his Mom.

Introducing Hunter Warner Knott:

4th of July

2009-07-08T17:18:00.000-07:00

Well we had a great 4th of July. Jim and Deanna came down for the long weekend. It was great to hang out as a 4-some for what may be our last (or close to our last) time before our little guy joins us.

On Saturday we walked down to Founder's Park and checked out the community festivies. We had a great time walking around and checking out all the different vendors, listening to the live band and watching the fireworks. The fireworks were awesome, they did a really great job putting the show together.

The 4 of us

Loving the belly!

Hunter Update

2009-07-03T11:54:00.000-07:00

Well we had another doctor's appt yesterday to check on our progress. At this point I'm 70% effaced and 1 cm dilated. Our doctor said that once I get 100% effaced dilating really gets going. Dr. Raffo said at this point if my contractions became more consistent like they were a week and a half ago she would not try to stop labor. Yeah! Hunter is going to be a big boy, the doctor estimates that he is about 7 1/2 lbs at this point and if he holds out until his due date he will be close to 9 1/2 lbs. Other then the continued contractions things continue to be pretty uneventful, Hunter is still as busy as ever and seems to be pretty happy just keeping us on our toes. :)

This week I was able to officially get all my work stuff turned over and I'm officially now on maternity leave...woohoo! Thankfully Hunter has held off until now and I'm incredibly thankful for that! See he is already listening to his Mom! ;) he he he

Jim and Deanna are visiting us for the long holiday weekend. YEA!! We are enjoying the last of our time together as a 4-some. It's a little surreal to imagine our little guy in the mix with us, exciting...but surreal just the same. :) I hope everyone is enjoying time with friends and family during the holiday, be safe.

HAPPY 4th of JULY!!!

Busy Baby @ 36 weeks

2009-06-24T19:17:00.000-07:00

So we've had an eventful couple of days...on Monday morning I was out walking the dog and had a contraction, I proceeded to have more contractions throughout the day. After talking with my doctor's nurse at about 1 they had us go to labor and delivery at the hospital to get checked out.

We were hooked up to the contraction monitor and baby heart rate monitor. My contractions were coming every 2-4 minutes for a good 2 hours. My doctor is on vacation this week (of course...just our luck! ) so the nurse contacted the on call doctor. Dr. May came and advised that we try and stop the contractions because Hunter is a week shy of full term and I was only dilated 1 cm, he didn't want to take any drastic measures to stop labor if that is where we were headed but thought it was worth a moderate try. I was given a shot of Terbutaline with the hopes that it would calm the contractions. After an hour of observation and no relief in sight they gave me a second shot. After another hour of observation and still no relief in sight I was still not dilating so we made the decision to head home. The doctor gave me a sleeping pill so I could get some rest and we headed home.

2 days later we are waiting for my water to break or for spotting to start. Until then we are taking one day at a time. I'm continuing to have contractions but they have slowed down to about 10 minutes apart. I'm scheduled to see the doctor on Friday afternoon and I imagine that if there is still no change we'll keep on trucking along. I have a sneaky feeling our little guy isn't going to hold off until his due date but we'll all just have to wait and see... :)

Almost there!

2009-06-24T18:36:00.000-07:00

We are officially done with Hunter's room. YEA!!! It has turned out very cute and I'm super happy with the final result. I've washed all the outfits, linens, and put away all our gifts. We have put together the playard downstairs to be used as a second changing station and bassinet. Jason figured out the stroller and the carseat, we even practiced putting Scout in the carseat.

He was a great model and played along. When it was time for him to get out he didn't want to move he was so comfy. We had a good laugh.

I'm definitely in the nesting mode and getting the house clean and organized was at the top of the list. Thank goodness for my awesome husband and mother in-law...the house is ready to go too.

Now all I have left is work...we are getting there. :)

Memorial Day 2009

2009-06-24T18:11:00.001-07:00

For Memorial Day we went to visit with our best friends like we usually do for the long weekend, it was a great time. We had time to just hang out, lounge by the pool, and enjoy a BBQ. Scout enjoyed himself too, he took a couple of rides out on the boogie board.

Out with Jay And again with Jim

Me and Dee

Baby Shower #2

2009-06-24T17:25:00.001-07:00

So the gals at work threw me a shower. We had such a great time, pin the diaper on the baby was freaking hilarious! Thanks ladies...Jason, Hunter and I are all very grateful you are the bestest.

The Aftermath...Before & After

2009-05-22T18:37:00.000-07:00

After the shower we brought all the gifts home and just dumbed them in Hunter's room. Thankfully Deanna came to help me get everything washed and put away. Here is the before and after. His room is coming along very nicely:

BEFORE

AFTER

Baby Shower & 3D/4D Ultrasound

2009-05-22T18:23:00.000-07:00

On May 9th my best friend Deanna and my Mother in-law Kim threw me a fantastic baby shower. It was great to visit with my friends and family. My Mom and Sister Alyssa were able to fly down from Idaho and hang out for the afternoon.

We first went to my 3D/4D ultrasound, it was so amazing. We got some really fantastic pictures of Hunter. I was really glad that my Mom and both my sisters were able to make it. Here are some of the photos that we love:

The entire day was so much fun and a huge success. We got so many fantastic gifts and it was really great to see everyone!

Baby Bump @ 27 weeks

2009-05-03T18:22:00.000-07:00

Baby bump at 27 weeks. I know I haven't been really good about posting the baby belly pictures but I AM going to try and do better. :)

Courtesy of Deanna Bernson.

Hunter's Nursery

2009-05-03T17:35:00.000-07:00

Hunter's nursery is really starting to come together. Last weekend Deanna came to visit to help me put together all the furniture that my parents purchased for us. YEA! It all eventually came together but it wasn't without a ton of laughter and some mild cursing. Thankfully Deanna helped out, Jason has really been busy focusing on completing his computer implementation at work and having Deanna around really helped Jason focus on his crazy work stuff so he can be done by the time Hunter arrives. Thanks LADY!!!

Jason and his friend Mike painted the main wall in Hunter's nursery. It was Jason's first major paint job and he is really proud of the way it turned out. The only minor paint flub happened the second the guys opened the first paint can. We were all talking about the design for the wall and not paying a whole lot of attention to Scout, well he walked up to give the paint can a good sniff and stepped right onto the freshly opened paint lid with his front right paw. His first 2 steps landed on the plastic that the boys put down to protect the carpet and the next 2 landed right onto the carpet. We all gasped in horror and then burst into laughter! Scout was soooo confused but he gave us all a good laugh. Even now there is a little blue paint on the middle claw on his right paw. We should have taken pictures. It was like a scene right out of a movie.

Here is the before:

And after:

We have the love seat in the nursery and I have ordered a brown slipcover to help it match the rest of the room and protect it from all things baby. Once we have received that and put the rest of the room together I will put more pictures up.