Lovely Evening

We had such a lovely evening, and it didnt start out well. We recently joined a community center with a pool. Although I really havent had the chance to work out, that is the goal. I did sign Ryan up for swim lessons, and he do so well. I was so proud, and it was so nice to laugh and watch him be such a big boy. The other boys helped urge him along. At the end he went under and I freaked out, but all in all, fantastic. He was enjoying himself, he loved it. I thought the swim lessons were at 6, but not until 650. I showered him at the gym and had him in his pj's and ready for bed. It was rather easy. I hope this continues to work out. He will start soccer in April.
I had a parent/teacher conference today, and he is doing much better, although I think his teacher is mean, harsh and could use an attitude adjustment. Ill be glad when she retires. Ryan is writing his name and just learning so much everyday. I cannot believe he will be 4 next month. Time has gone so fast.
Looking forward to a nice weekend. We are just going to enjoy what we have, while I work on homework of course. I cannot forget that. It is tough, and I feel like I am spending more time than ever trying to keep up. I hope it doesnt get any worse, if it does, well Ill reconsider school. My cousin said she thought I was crazy for doing it. LOL. I never seem to do anything the easy way. I take it all one day at a time, sometimes one moment at a time. That is all I can do.
We received Ryan infusion med this week, and he will be infused tomorrow. I truthfully would like to stop it now. He has already been off for 2 weeks. Im listening to the docs, but am going to call just to asks. They finally put him on meds for sinus infection and my child is back to normal. Oh, he is just nasty when he doesnt feel well. I suppose we all are.

Take care
The Kunkel's

Determine

I really do not know how am I am able to keep up this space for much longer. Is it worth it to not experience the day to day fun I should be having with my child? I feel like I am constantly saying, "ok, time to go in the house", this just so I can get things done so that I log on to class when I need to. I am struggling if this is worth the effort and time away from Ryan to finish school. Three more years like this? I do not know! Why should he have to pay for my lack of time because I decided now to finish? I will have to contemplate that for a while, and see what I come up with.

Nice Weekend

We have had a nice weekend. Ryan was with Janene on Friday, while I ran errands and watch the Manual game. We hung around home all day saturday and then Ryan went to Lorey's to play with Kaden and Landon, while I went to the Manual game. I was great to be there and watch great high school basketball. Manual lost but they played their hearts out and showed great sportsmanship. Nothing less from the Manual team. I saw so many people from my high school days, and all the Ram spirit on facebook was wonderful. I do not think that feeling ever goes away. It really seems like Peoria bball is in our blood.
Ryan was around a dog last night and I think he is gonna be allergic to animals. We will see on the 29th. I spoke with the St. Jude physician on Friday and he is going to continue treatment until the end of April, his blood work was normal, he is waiting for some doctors from Memphis to return his call, and he wants Ryan allergy tests in a few weeks. That will happen March 29th.
He is doing better, they are finally treating his sinuses with antibiotic, and I always know that within two doses he is getting back to his old self. That is nice and I always enjoy my boy.
Nothing else to report. Lots of homework, work, and appointments this week. I have to buckle down and get busy, keep focused.

Hope you all are well.
Take care,
The Kunkel's

Pretty good day

It was a nice day, glad its almost over. Started with a great class at work. Very interesting. Work, well its work and busy. Class going well. Ryan finally slept through the night in over 2 weeks. I know I slept hard but was still exhausted. Ryan played outside tonight; rode his four wheeler and played on his swing set. I have new sprouts on some of my flowers, that is soooooo exciting. I just wanted to grill out and eat outside, and have sunshine. Oh, I love the sunshine. Maybe Florida is what I need right now. Sit in the warm sun, on the beach and play in the sand with Ryan. Oh that would be lovely........ ok, back to reality, but it was a nice dream wasnt it.
So, Ryan was great tonight and just very tired. Poor guy cried his heart out at bed time. Just overtired. I hope he sleeps great tonight and lets his weary body rest. Ill call on thursday to St. Jude and hope they have some plan worked out. The waiting is not easy. Been emotional but have some great old and new friends that are helping me, keeping me sane, so to speak.
Its amazing the things we learn about ourselves at times in our lives, and how people come out of the blue to enrich our lives at the right moment. Its simply a blessing I didnt see coming. Those are so nice!
Not much else to report. Looking forward to see all the small group friends. They are just a lovely bunch of people and I enjoy all the moments with them, and learn so much. Most of all they are my relaxed place, and I dont have many of those.

Enjoy your night,
We are blessed by you all,
The Kunkel's

Sleep, sleep

Im hoping Ryan will get a good nights rest. He needs it terribly. Poor little guy hasnt slept through the night in weeks. We have had a pretty good few days. Read books tonight, actually Ryan read to me, and we practiced writing his letters. He played a game on pbs.com. He loves that. He really is good at the computer. It was shocking to me. These kids know so much more than I did. WOW!!!
Ryan saw his pediatrician today. Tested him for strep, she said he had some signs, but the rapid strep was negative. Will see what the culture determines. Ryan sure is enjoying his four wheeler. It is perfect, especially because someone brought it to my moms, free of charge, just needed a battery. Its great. He will have the tires worn out soon. I better see if I can get replacements.
Not much else to report. Waiting for thursday to get here so call St. Judes. I hope its not another week or I get shuffled around. That will be frustrating. I did tell Dr. Diane (pediatrician) I was frustrated with all this. She understand but really doesnt have anything to do with it.
Work has been very busy as we have a new computer program. I really like it, and hope it works well for research. The new block of classes are going well. I really enjoy them so far. The first block was rough. Just a complete time management change. Getting better everday. It ended with an A and a B for my two classes. Not bad for a old gal going back to school. Everyday I can see myself in a pediatric oncology unit, running it to the best of it ability to benefit thoses sweet kids. I get more excited and the admin people at work help me everyday.
Really looking forward to warmer weather. I miss the sunshine so much. It really helped boost my mood on saturday. Ryan and I played outside, and I told him keep his hat off do that vitamin D would soak into his skin. The is so good for us.
Well, off to read, then bed. What I would really like is to eat, Im starving, but its to late for that. I dont need anything else sticking to my hips. LOL

Enjoy your week, I hope everyone is well, safe, and blessed
The Kunkel's

Lots going on, part two

So, this past thursday, Ryan was seen at our local St. Judee affiliate again. We have been seen there over the last 1 1/2 months. Ryan saw Dr. Al thursday, we had only met him briefly two weeks prior. He had reviewed his chart and history, examined Ryan, and we sat down to discuss what the next step is. I have had, for a long time, a since of dread looking forward to the withdrawal of Ryan's medication. I do not feel like his immune system will work on his own. I can only pray that the medication has allowed his body to heal itself and will work to fight off disease, viruses.
So, Dr. Al said that if his blood work comes back normal then he goes of medicaton. Well, I checked, its normal. So when I call on thursday my guess is that is it for medication. I do not know how long they will wait to repeat blood work, all I know that in our conversation, Dr. Al said they are limited in the treatment he can receive here and that although he know the most about Immune Def., he wants Ryan to be seen by the Immunology expert in Memphis. So when I heard Memphis, I wanted to bust out in tears but I had to many questions. I really do not know when he will go, what will happen, or any specifics. I know that Dr. Al said he will not ourgrow this as the defect in the gene will not go away. What happens as kids get older, they are not in others personal space as much so the level off infection goes down. He said treatment would be different than what it is now. He also stated he thought once a week infusion were alot for a almost 4 year old, and thought monthly IVIG at St. Jude would give him better benefits. While I know that his sinus infections were vastly different, the reaction he had was awful. So, as I said this is all up in the air. We are taking one day at a time. Im sticking with school full time. Thank God for online classes. Ryan is still having breathing problems. We went swimming today and the poor kid was huffing and puffing, but it did get better. Maybe the deep breathing helped.
While I was shocked at first, then terribly sad, and am still sad, I know this is the best treatment for him. I know that I have every confidence in managing his health, and that not one other person knows more about his problems than I do. Ryan is a blessing, in all his sickness, he is a true blessing, and I am so proud and lucky to have such a sweet boy. There is one side of me that is fine with all that has happened in his short life, every struggle, every tear, every night awake in a hospital by ourselves, then the other part of me wants him to run and not baby his right foot, not have to worry about building muscles in his legs so he can do those sports he may choose to do, not having to worry about his breathing or if he needs to be infused. Its a tough fight those sides. What is nice is those special moments laying in the crib in the hospital singing songs, or watching him walk for the first time at Easter Seals. Special moments that others could share with us.
Again, day by day. We are fine, I have moments, but we spent some good time together this weekend and that helps mom.
So, as I know more about Ryan, I will post on here. I am going to continue with swim lessons, soccer, hockey games, chiefs games, all the things he enjoys. I will be continuing school as I want to be finished and running the pediatric oncology unit very soon. :) I will be looking for more reliable transportation. If we are going back and forth my 96 Buick, well it may not get us there or home.
Ryan is asleep and I thought I would put up another update. Just finished an assignment and off to read a couple chapters before bed.
Lots of prayers would be fantastic.

Hope you all are well and we love comments, so feel free to chat here.

Bless you all,
The Kunkel's (Becky & Ryan)

Lots going on

Well, many of you know that Ryan has had a rough road during his almost 4 years of life. He really has done so well. He is a tough little guy. He has made it through two stomach surgeries, one foot surgery, mutiple tests and hospitalizations, gosh I know there is more just cant think of it all. Well, about a year ago, a fantastic doctor that is no long in practice found that Ryan has an Immune Defficiency. It was really by accident, I think. I was telling her that he is sick alot and how it starts in his sinuses. She wanted to do some blood work, and ended up checking his Immunoglobulins and they were low. His Igg and Igm were the ones low. So that lead to some blood work being sent to Mayo clinic. What the doctor said was that he didnt build any antibioties to the immunizations that he received. Normal kids build up those antiboties to protect them from disease, but essentially Ryan is hanging out there without protection. So he was set up at St. Jude for IVIG(gammagard). Its a product derived from other peoples bone marrow, it goes through a filtering process, and then goes to the person that needs it. It is kinda scary, although it does go through that filtering process you just never know. So, Ryan had his infusion at St. Jude 45 weeks ago, and did well to begin with. After 3 1/2 hours they turned the rate up, and he reacted. He was shivering, breathing fast, sick, it was awful. I describe it like reacting to Chemo, but without getting Chemo. So they medicated him again, and decided not to give him the full dose. It took 9 days for him to get back to normal. I dont know who parents of children that have cancer, keep up with the side effects. How awful. After that Ryan started infusions at home, once a week. I put needle just under the skin in both hips and infuse a medication called Vivaglobin. Less side effects, and seems to do well.

So there is the history, Ill be telling more of this later. Why he is on his way to Memphis. Off to fix breakfast to this growing boy on a Sunday morning. I think we may head to Pearce to swim.

Have a blessed day
The Kunkel's (Becky & Ryan)

Its been a long time.

Just a quick note that I am going to start writing more in Ryan's blog. We are on busy times and there is always so much going on, this help keep everyone informed. Im off to nap while Ryan is doing the same. I will post more later.