2007 updates

Happy Thanksgiving! Wow time passes quickly! Ryan is doing so good. He is eating, gaining weight and just being a regular kid. He is talking so much he says everything in full sentences. He loves his cars, he plays with them all day long. Lightning McQueen is his hero!!

We have so much to be Thankful for. We are so thankful for our 3 children that they are all healthy and happy. We are so very thankful to Dr Kim and the transplant team for saving Ryan's life and allowing us to have this precious little boy in our lives. We are forever grateful to the donor family who made that difficult decision in such a horrible time in their lives to donate their childs organs. That truly unselfish gift saved our son and they are always in our prayers. Thanks to our family and friends for all their prayers.... they were heard! May you all have a very Happy Thanksgiving

8-28-07 Well, Ryan has had some time to heal and is doing great. He is taking his meds for me all the time even when he is asleep! Rich said he looks like a little baby bird when he takes his pm meds because he truly is asleep but he feels the syringe and starts sucking it! He is just so cute!

From a CF standpoint we have had a minor setback. He has Pseudomonas which is a bug in his lungs that only bothers kids with CF. Pseudomonas is found in water, dirt, food... basically it is everywhere and doesn't bother the general public, we are able to fight it off. So, this means that he is on Cipro 2 times a day for 14 days and TOBI which is an inhaled nebulized med 2 times a day for 28 days. It is not so easy to get a busy toddler to sit still with a nebulizer for 20 minutes twice a day! I try to do it while he is sleeping which works great at night but if he decides not to nap in the day it is tough. But, overall he has been doing fairly well with it. He doesn't have a cough or runny nose so very thankfully they do throat cultures on him and Kayla every 3 mos and that's how it was discovered.

On a different note, I had a conversation with someone in the "Medical field" today that is very well versed about the different hospitals that do transplants and let me just say that someone up above was watching over my child when we got the OK to go to Boston. I am so very thankful for the people there and how very dedicated they are to my son. I don't think I realized all the work post transplant and how extremely important it is to have such close contact with your transplant center. I talk to or get emails from someone there on the team at least once a wk. They are a HUGE part of Ryan's care still. They call the shots pretty much as far as labs and his prograf. I send them pictures or funny stories of Ryan and you know they are happy to hear about him. When I went there for his ostomy procedure the nurse manager took me into her office to show me pics of Ryan by her computer! I mean, they KNOW him. Unfortunately, not all centers sound as organized, involved and easily available to talk with as others. So, Thank You God for taking such good care of us and putting us where we were meant to be.

8-2-07 Tonight Ryan and I are spending the night at All Childrens because in the morning he is going to have his GTube site closed up!! Wah Hoo. Well, actually it started a little over a wk ago, Ryan pulled out his mic-key button so we left it out. He has been taking all his meds by mouth for a little while now and he does great. He is also still eating very good and gaining weight so there really is no need anymore for it. The problem is, it is not closing completely on it's own. It has been leaking a little here and there but the major problem is his Prograf level (anti rejection med) is very low so he could go into rejection. So, needless to say Dr Reinstein got us in here asap to have it closed surgically. This is the first time in his life that he doesn't have any tubes,lines, ostomy etc. He truly is a miracle!!!

7-1-07 Ryan is doing great since his surgery and being back home. He had labs done and everything looked good and for the first time we can go a month without more labs! Finally a little break for him which is so nice. He is enjoying the summer and loves the beach and pool. Life is so much easier without his ostomy. We still have many oral meds, inhaler (albuterol), nebulizer (pulmozyme) along with chest PT but he does pretty good with everything. The next thing I will have to start working on is getting him to take ALL his meds by mouth and not through his g-tube. If I can acomplish this we can have the g-tube taken out because he doesn't use it for feeds, only meds. That will be nice because I think it bothers him. He pulls at it sometimes to the point he gets it bleeding.

We got him some underwear (Cars and Diego) which he likes to wear during the day and a little potty chair. He even looks cute sitting on the potty!! He hasn't done anything yet but at least he is showing interest. He is also counting! He will count to six and sometimes goes to 10 and he pronounces everything at this point so clearly, he is saying full sentences, not just words which I think is unreal for a 2 yr old, but being his mom I think everything he does is pure genius!!

6-8-07 Well, so much to write about! We all flew to Boston on May 4th for Ryan's surgery. We stayed at my aunt & uncles house once again! Thanks Jimmy & Jo... we love you!! On saturday we had a huge party for Ryan's birthday! It was so nice to see everyone and for family & friends to see how great Ryan is doing. He had such a great time, he loves being the center of attention. Of course the theme was Ryan's favorite....Thomas & friends. It was such a great time, Thanks to everyone for making his 2nd birthday so special.

Monday the week for Ryan began with blood work, contrast enema, chest xray and a trip to the transplant clinic for his check up. Everything looked great so the surgery was a go. Then on Wednesday he was admitted to Boston Children's. Rich & I both slept at the hospital and on Thursday morning he had his surgery.

Wow, did it bring back memories... sitting there in the family area to hear anything they could tell us.... the stress is just overwhelming. I think I blocked out how horrific it was during the transplant, not knowing if it would even work or if he would come out alive, probably a good thing that our brain has a way of protecting itself through denial!

Anyway, he did great through the surgery. Dr Kim said most of the surgery was spent trying to pull down Ryan's undescended testicle (Ryan is really going to love this website someday LOL). The connection of his bowel was easy the doctor said compared to the testicle issue. So, needless to say Ryan has had a good amount of pain from it.

Since we've been home Ryan has done excellent. If he overdoes it by running around too much (yeah, try telling a toddler not to do that!) then he has some pain but I can give him tylenol and that helps. Life is so much easier without the ostomy. He is able to go swimming which he loves and we are not constantly dealing with "the bag".

4-23-07 Lots of things happening in Ryans little world! We did our "Great Strides" walk on Saturday and raised $1,070 for the CF foundation. We moved to a bigger house with a lot more space for the kids. And now it is the countdown to our upcoming trip to Boston. Ryan will have the surgery to close his ostomy and connect his bowel...Hurray!! This is such an exciting step for us. We are all looking forward to spending time with our family in MA and while we're there we'll be celebrating Ryan's 2nd birthday! We will be heading up to MA on May 4th and I personally can't wait to show him off to everyone!! It is just amazing how wonderful he looks and how much he has changed since they last saw him so this trip will be very exciting. Our family will really see with their own eyes how powerful prayer really is.

4-4-07 Ryan is doing wonderful! He is enjoying all the spring fun and getting ready for Easter. Friday he has a scan of his spleen to make sure it is functioning. For this he will have an IV with a dye injection and then a scan. He's scheduled for 9:30 so please keep him in your prayers.

3-16-07 Yesterday Ryan had the CF/GI Clinic with Dr Gondor & Dr Reinstein. It went well, his weight has stayed the same so they would like me to weigh him every 2 wks and call it in to them. They'd like him to bulk up a little if he is going to be going into surgery, hopefully in May to have his Ileostomy reversed. His lungs were clear and his ears looked great! So the infection is cleared up. He had to have a culture of his sputum so I will be waiting for those results. I spoke with Boston and they are hoping to have us come up in mid May to do the surgery, I can't wait!!

3-9-07 Ryan had a temp and was really cranky which is not like him and he was pulling at his ears so I took him to the pediatrician and she was shocked to find he had a double ear infection that was so bad his drums were ready to blow! So, he had a shot of rocephin and is on augmentin for 10 days. I can't imaging what his pain tolerance must be because he was just a little cranky... I'd be screaming!

3-8-07 Well, Thankfully things with Ryan have been quiet. He's had routine labs done and all looks well. His prograf level is a little low so we are working on his dose. He has been very healthy though, Thank You Lord! He had a little cold but is getting over it. He has just been having fun with his sisters and learning lots of new things. He loves to go into our moon walk outside which he refers to as "The Bouncy". He is talking so much and really is a funny kid. He has such a great personality, he's lots of fun. His newest thing is his "knock knock" jokes, they're pretty bad but he still gets a laugh! He loves to dance which he did tonight at Ashley's school for a family night they had, he had so much fun, he really thought he was a big shot. He dances and sings pretty much all day, mostly to the wiggles. It is so amazing to watch this little miracle child in his day to day routine, learning, growing and enjoying life. We are so lucky to have him :)

2-15-07 More labs for Ryan today. He did fine but my poor mom came in and it just broke her heart I knew she was crying and trying not to let me or Ryan know, I felt so bad. They draw the blood from a vein in his head because his tiny veins in his arms and feet are so worn down from all the past draws and he has really "good" veins in his scalp, so it is pretty traumatic to watch. But, Ryan is such a trooper that once it's over, he is fine. His labs look good his Iron is still a little low but coming up with the new iron med he's on.

On another note he had a great Valentines day. He went to a party at Ashley's school and made a pig of himself with all the sweets! This boy can eat!! Which is SUCH a miracle... we didn't know if he would EVER eat, now we don't know if he'll ever stop!! He really loves his food and I really love watching it. Last night he went to one of our playgroup playdates and he really enjoyed himself. He thought he was so cool running around, playing & dancing it was just so nice to watch. Thank You God!!!

2-7-07 Ryan finished his course of Flagyl and it really helped him. He is doing so good right now. He is just growing and changing and learning so fast it is amazing. He is saying sentences now like "Look at me Kayla", "I go see nee" (my mom), "I want it" which is just about everything he sees!! He loves to play with his sisters, climb, dance and he has this contagious laugh that just cracks you up when he starts. He loves to eat, in fact he does it just about all day long! He will walk out to the kitchen and go in the cabinet and point and tell me exactly what it is that he wants... soup, cracker, Doritos...yes Doritos! He loves them and if I don't jump up and get these requested items for him he brings them to me. I took him shopping the other day and he pointed out soup, cookies, cheese... next shopping trip he is staying home! I'm just so happy to update that hs is doing great. He is such a joy. I thank God every night for Ryan, Ashley & Kayla.

1-29-07 About a week or so ago Ryan was having a hard time sleeping. He would wake out of a sound sleep with lots of gas and he was in pain. I tried mylicon drops which did nothing. I spoke with Dr. Kamin over the weekend and he said it was probably a bacterial overgrowth in his intestine and then I remembered that he had this once before and all the symptoms were the same.. increased ostomy output with an unusual odor and gas and just overall hard to settle. So, we put him on a 7 day course of Flagyl, hopefully this will do the trick but already he seems a little better, he slept better last night too.

1-26-07 Ryan is feeling much better, the tamiflu worked well on him. He has his appetite back and is full of energy once again. He had labs on Wednesday which came back looking good. His prograf level was a little high so we've decreased the dose. He also had his synargis shots (to prevent RSV) the same day as the labs.. poor little guy!! He had a rough morning that day. He kept yelling "all done" again and saying "door, car" He just wanted to get out of there, I can't blame him.

I did get his throat culture results today which showed "Seratia" which is a bug that he always carries. Nothing to worry about and not anything to even treat. I am very grateful that he does not have Pseudomonas again!! He'll probably have to have labs drawn again next week to check that the prograf level is ok. But, all in all he is doing very good

1-18-07 Ryan and Kayla had their CF/GI clinic today and it went awesome! Both have gained weight. Ryan is up to 23 1/4 lbs and is 31 inches long. His lungs sounded clear and both the pulmonologist and GI doc were very happy with him. They were all laughing at his growth. His sats were 99-100% and it was decided that he is looking and sounding so good that they will hold off his chest xray. He did have a culture of his sputum to determine what bugs are in his lungs (this is normal for CF kids to have done) and hopefully there will be no pseudomonas knock on wood. So it was a good visit and he doesn't have to go back for 2 months. Also, his prograf level came back perfect, this is his immunosuppresant drug so we will keep the dose right where it is. He is still feeling achy from the flu and is cranky at times and clingy but is slowly getting his appetite back.

1-17-07 Today has been an eventful day! Ryan had a fever last night or 102 and just all around miserable. We were scheduled for labs this morning which we have every 2 wks sometimes every week depending on his prograf levels. I spoke to the transplant team and they had me get our usual labs along with cultures then we had to go to the pediatrician to have him checked out. She did a nasal culture which came out positive for Influenza A! Poor baby. So he is on Tamiflu for 5 days. Tomorrow will be another full day. We have to head down to All Childrens for both Ryan and Kayla's CF/GI clinic. They want Ryan to have a chest xray tomorrow as well. Today Ryan found a new way to break our hearts while having his labs... he said "Mama I cry" Oh the tears on him :( But as Ryan always does.. he did just fine.

I got the results back from his biopsies which showed NO REJECTION! Wah hoo but it did show inflammation in his intestine that pathology has determined is an eosinophil issue. Boston's pathologist will review it further to determine if this could be eosinophil esophogitis.

1-12-07 Ryan had his upper GI and ileoscopy with biopsies today. The doctor said that everything looked good. The upper GI showed no problems but the lower showed a little inflammation which he thinks is just due to irritation from his stoma. They took biopsies to be certain and the results should be in on Tuesday.

He did very well but it really wiped him out for the rest of the day. I just feel so bad because now that he's a little older he understands what's going on. As soon as the nurse comes into the room Ryan yells "all done" which just breaks my heart. But, Ryan is such a strong little guy and as always he did great!

The nurses were all coming in and out to see him and laugh at how big he's gotten. They were calling him "chunky monkey" which was music to my ears!! They remember him before the transplant and how malnourished he had been so it was great to see how amazed they were at "our" little miracle!

1-10-07 We did another hemocult of Ryan's ostomy output and it was still positive for blood so he is scheduled for an ileoscopy and an upper GI (scope of his intestine to see where the blood is coming from) on Friday. This will be done in St. Pete at All Children's. Please keep him in your prayers!

1-4-07 Ryan had lab work which he usually has once a wk. So far all his labs look very good. He had some blood in his ostomy output so we need to test that another time and if it is still positive he may have to go for another scope, the blood could be due to the iron he's on so I have to hold the iron and then do the culture.