Wednesday, October 6, 2010

Who needs sleep?

I guess with the energy JJ is getting from food now he thinks he doesn't need to sleep. He has not slept a near normal night or nap since 2 days after the hospital stay. He was good for a few days after and then started waking up every 15 min to every hour every night. Then he had that tummy flu so we figured that was it and recovering and getting his normal eating back. STILL is not sleeping. He is fine with his new schedule...runs around happy as can be all day. The rest of us...not so happy. John and I take turns...one night him and the next me. I am not exaggerating when I say how often he gets up. Usually he does have a few hour spurt and wakes up around midnight the first time and then every 15 min to an hour screaming. Often he goes right back to sleep but not always. The closer to morning, say starting at 4am or so, he just keeps insisting that he is done sleeping and he really doesn't sleep after this even though we won't let him get up until 6:30. We mostly think he is just not wanting to be alone in his room but have other ideas that could contribute since he really shouldn't be waking up that often to demonstrate the anxiety of being alone. Sometimes he is just having nightmares....like about the Barney theme song. He was singing that and crying one night over and over.

Tonight we decided to try motrin to see if it helps because sometimes we do get the feeling with his first scream upon waking that something is strange or hurting him. If it did not work then tomorrow we were going to try moving Isaac into his room and see if that helps him. But tonight with tuck in he said he was going to puke. I mostly dismissed him but sure enough a little bit later he did. So now all bets are off for tonight. Isaac went to bed with a bad headache and not feeling well. Ahhhh, here we go again.

Cardiology appointment scheduled for Friday. Even though we are usually sure his heart is fine and stable there will always be this lingering fear that the possible will come true...a set back, a change with big growth spurts. It's always good to have some things run and talk to the cardiologist to reassure us.

Tuesday, September 28, 2010

23 pounds again!

We had reached 23 pounds right before JJ got sick with the virus that landed him in the hospital. That was followed by the long lasting tummy flu. Jerry is eating great again and back to 23 pounds. We are ecstatic about his eating right now and just holding our breath that it continues. Yesterday after finishing all of his food at dinner he announced "I ate it all...now I can ride Isaac's big bike!!" We tell him all the time that eating food will help him grow big. I hope he gains some inches around his belly quick. We have no pants that will stay up on him. If they fit his waist they are 6 to 9 months and then are too short! He is kind of out of diapers too so there is no extra padding for the pants to hang on too. Thanks to everyone who has been praying for us and checking in.

Saturday, September 25, 2010

The latest

After JJ had a few really good days recovered from his virus and hospital stay, he got a tummy ache and threw up. He was up all night and I guess had the stomach flu. His was strange as he kind of threw up once every two days for 6 days and only had a fever one of those days. He didn't feel well and was waking up every 15 min or so most of the night. Two days after he started with throwing up, Isaac and I felt sick and started throwing up. Ours was really severe though with high fevers and pretty knocked out for a few days. Appetite and energy took about 5 days to really come back...not the 24 hour bug!

Now Jerry is over the tummy flu but is still not eating well at all. He ate well after the hospital and was eating well before that illness. He is losing weight so I hope he picks it up again soon. He is still having some other strange symptoms. His forearms and hands sometimes seem to hurt him. A few times one of has sat down next to him and just brushed against his arm and he cried holding his arm in pain. He says his hands hurt when I am washing them and his upper leg and hip area seems sore when we are pulling up his pants, especially a pull up. It seems like it might be sensitive skin since the pull up has kind of a scratchy feeling on the sides. Finally, he has these episodes of eye pain or discomfort. He will suddenly start rubbing and holding his eye (I think it can be either eye but usually one at a time) and crying. He also sometimes cries about the light hurting his eyes. Always a puzzle. I have been not thinking much of the eye thing but now I am going to check into it. I've been thinking they just itch but they are not red or irritated that I can see.

Sunday, September 12, 2010

Jerry is doing great!

Jerry is close to 100% back to normal. The first few days home from the hospital he was really weak and still not wanting to walk right away in the morning. He was actually saying a few times a day "I'm really tired," which is really odd for him. He finally took his bandaid from his IV off and had quite a fun time laughing and saying, "ouch, that hurt!" He had seen me rip Isaac's booboo bandaid off and him yell "Ouch!" and thought it was so funny....kind of like he's mocking Isaac I guess. What goes around comes around, Isaac. So now JJ is running, climbing, and is ornery as ever! He has that playful gleam with raised eyebrows again every time he is about to do something he shouldn't...and we LOVE it! Best of all, he is eating like a champ. He even drank a good amount of a chocolate milkshake today. I have tried those several other times to no avail. We are thankful for each healthy day!

I forgot to add to the hospital post that Jerry actually (even as sick as he was) peed in a cup for his urine test to avoid the catheter. I asked the nurses to let us give it a try after he was hydrated from some fast flowing IV fluids and sure enough he told me when to get the cup!

Tuesday, September 7, 2010

A hosptial stay and it is not even fall yet!
















Jerry came down with a virus this past Thursday and got worse up until Monday when we finally went to the ER at CDH. The diagnosis was kind of inconclusive between walking pneumonia or a less specific unknown virus. His fevers were up to almost 104 and he became increasingly sleepy and hardly walked even today. He wasn't drinking much at all so dehydration was a major concern. It was heart wrenching seeing our baby go through this. "Mommy, I am sick. I tired and need to sleep in my bed. Please can we go to my house now?" He was grabbing his chest in pain a few times and of course that is one of the scariest things for us. My confidence grows each time he is sick that his heart at least can handle it but I also have a little fear that our "luck" could run out and I should keep my guard up and error on the side of caution. We are proud of our brave, strong boy, especially how he did his "breathing" to get through starting the IV.

So, tonight we think we are out of the woods. His heart echo was the same as his last echo so we know that it has not suffered any damage from this illness. His fevers stopped last night and he started drinking a little more today. He broke out in a rash today which could mean the end of a virus. He walked a few steps and was a little playful so we will hope he just improves a little more and we can go home in the morning.


A special thanks to Dr. Kalish who kept checking on us while Jerry was sick, the excellent staff here at CDH (especially the ER girls), and to my mom for once again somehow planning her visit around our illnesses and catastrophes!! Every time she comes (and usually when we visit her in Cleveland) we go to the hospital or the doctors. Last time she came we were all about leg x-rays and casting for Jerry. We had so many fun things planned so we really hope for a better visit next time.
The first picture above is right before Jerry started getting sick. Playing puppets with brother and friend Matthew. There are so many other updates I have been wanting to write. I guess it takes time in the hospital to update the blog these days. Until I do get to put in some other details, I can just say that eating and weight gain has gotten better. We just pray for as few illnesses as possible this fall and winter so that we can keep any weight gained.







Wednesday, May 5, 2010

NO Cystic Fibrosis!

I have to admit...the "what if....?" was playing in my mind to some extent, but mostly I was not worried. So on to the next rule out. He seems a little out of breath after running around and did some kind of strange breaths tonight as he was falling asleep. He still has this virus/sinus thing going on. It was almost completely gone Monday and Tuesday after Monday night's last dose of antibiotic. Seems worse again today but he is still pretty energetic and happy.

The even better news is that JJ is eating really well for a few days now!

Saturday, May 1, 2010

Another Test and Appointment Behind Us




We had the cystic fibrosis test on Thursday. It was AWFUL!! Jerry knew we were at the blood lab and did not buy into my "no owies." It was a much longer and annoying process than I had thought it would be from reading and hearing about it. The biggest problem was his anxiety but who could blame him. It was this process of washing, drying and wrapping both arms. They used tourniquets and attached electrodes which were on each arm individually for 5 minutes providing tingly electric currents. I think that was to put something into his arm to increase sweat production. Then they repeat the washing drying and tightly wrap each arm and let us go for an hour hoping that he sweats enough into the gauze for them to measure how much sodium chloride is in his sweat. He was quite a sight with his cast and both arms taped up. We managed to get through it by doing everything to me first and also one of the techs was distracting him with toys. Then when we went back for them to take all the tape off, it was another horrible scene. He seemed OK at first, like he believed me that it would not hurt and they were just taking the tape off. But then it pulled on his skin and hurt. I was very upset that they did not have any adhesive remover and got them to pull out the gauze that they needed so I could go home and take the bandages off with adhesive remover pads. "Arm test" all done Jerry kept saying. After a long day and long drive home in traffic, it is over. We should get the results soon but I am not all concerned that he could have it.

Lat night JJ was up most of the night screaming. He would calm down when comforted but said his belly hurt. We had given him his first dose of a potent probiotic that was recommended and that is the only thing I can think that would be upsetting his stomach. He was fine today cheering Isaac on at soccer.

JJ's cast comes off on May 12th. We are going to Cleveland on Tuesday...Jerry's last free flight. John joins us on Friday to drive home on Sunday. It will be a year on Sunday the 9th since Papa Jerry passed away and I think he is still around helping us through things.
As you can see in the pictures, as bad as these appointments and tests are, Jerry gets over the trauma quick...until the next prodding appointment.

Right before this video, Jerry was saying "hug Isaac" but then running away teasing him. So Isaac was pouting on the couch about not getting his little bro hug.




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Tuesday, April 27, 2010

Happy Boy Again!

Jerry is feeling much better as he gets over his cold and ear infection. He is getting around great in his cast now. I hope he doesn't get too crazy and break the other leg! Probably should not joke like that.

Jerry's heart? Always I worry about his heart. He is at times out of breath or looks really pale but mostly he seems fine. There is not much I can do with little worries unless there are bigger more substantial red flags. This is of course hard since he had no BIG red flags when his heart was getting worse before. It is killing me not to know how much he weighs. I can tell that he has gained since he got his cast on but I don't know how much his cast weighs!!
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Saturday, April 24, 2010

A spring cold and ear infection to top it off

My poor guy has been sick with a cold/virus since last Sunday (Isaac is so good at sharing!). He has walked a little on his cast but has been pretty worn out from his cold. Today he still seemed pretty congested, was pulling on his ears more and not at all into eating. So I took him to the med center around the corner and they found an ear infection. So now hopefully the antibiotic will kick that and we will be on the mend. I hope his leg is OK after the cast comes off and that he won't be really weak. It is supposed to come off on May 5th. However, I bought plane tickets for Tuesday the 4th. I am not sure how this is all going to work but we want to be there for sure for the weekend and the cheap flight was on Tuesday. John will meet us there Friday to drive home on Sunday. Our orthopedist is out of town so we will not hear from her until Monday. I was thinking we could take his cast of a day early or a few days later when we get back or even have it taken off in Cleveland??? Probably not the later I guess. If none of these are OK we will just cancel our flight and....I'm not sure what we will do.

In the meantime we have appointments scheduled with an ENT to make sure nothing there is making him reluctant to eat and an appointment scheduled for his Cystic Fibrosis test. I will schedule an appointment with the endocrinologist and after that....I think there is nothing left to look into. If he doesn't start packing on the pounds (or at least ounces) in the next month we will be heading for the feeding tube. I will want to have his heart completely checked before we have that surgery. Praying that these appointments are at least buying JJ the time he needs to forget the pain he had from eating and start new habits.

Wednesday, April 21, 2010

Waiting for the next adventure and hoping for none!

Jerry is doing OK with his cast. He tried to walk in it a little more today but he has been sick with a virus so that isn't helping much. I'm hoping this is a passing cold virus but he is pretty congested, coughing and miserable. No fever today so that was improvement. I keep wanting to say JJ can't catch a break....but I guess he did! He has now missed 2 sessions of Kid Rock music class (he's very upset about it, hehe). Not sure if we should just withdrawl. I need to see how many sessions there are to see if it is worth while.

Gigi left yesterday and we were sad to see her go. She was amazingly helpful, although we wish we didn't have "adventures" every time she was here! We plan to travel to Cleveland the week before Mother's day weekend and stay through the weekend. I am trying to get a flight in so the kids and I can go early since John won't be able to come until Friday night. This would be JJ's last free flight since he turns 2 on the 16th!! The logistics of getting to the airport are difficult and the good fares end tomorrow.

In the next few weeks we will have the test for cystic fibrosis, consult with an ENT, and hopefully have the cast removed on the 5th. Also trying to schedule to see an endocrinologist. All of this just to be absolutely sure there is nothing going on with eating and weight problems that we haven't uncovered yet.

Thursday, April 15, 2010

The best news ever... a broken leg!

















Our appointment today went really well. JJ did such a good job and really did not cry until he saw them put on the gloves for the cast. He for sure thinks this means shots. He got over the gloves thing when he started playing with the cotton wrap and I told him it would fix his leg so he could play and walk. He locked into the play part and just kept repeating "go park."

So this doc thinks that the x-ray shows an old break healing. She believes he re injured it but what they see is the healing of the old one. He has toddler fractures which would not show up right away but do show up later when they are healing. I feel really kind of guilty that I did not end up taking him in the last time but he was walking on it some the same day and walked and climbed normally in 4 to 5 days. The doc assured me that we would be in the same position because the break would not have shown up.

I am pretty much on board with this but still a tiny bit nervous that a bone infection could be missed. The doc is pretty confident but said we will look into it more if any other symptoms turn up or he does not heal. I never thought I would be so happy to have a cast on my baby (the bone infection can be pretty serious). We did go to the "park" playground when we picked Isaac up from school and then later went to the library which he loved. He is trying to walk on his cast a little and decided he would hop so he finds it pretty funny to say "hop...hop..hop."










Wednesday, April 14, 2010

Can't believe this is happening

We have been evaluating JJ's leg injury since he has not yet put any weight on it. We had ankle and foot x-rays one day and then went back for x-rays of his lower leg the next day (thinking we missed where the fracture could be). The x-ray today showed possible bone bruising or osteomylitis (bone infection). Usually with bone bruising he would be walking and also he did not fall with the part that would be "bruised" hitting the ground. Tomorrow we will go to a pediatric orthopedic doctor to check this all out. My research into all of this is NOT helping me feel better. He had a strange fever few weeks back and then fell and had hurt the same leg. Anyway, it all adds up to at least suspicious. Please send good thoughts and prayers that everything is fine. Also, I am thinking of Isaac who cannot seem to get in a good visit with his GiGi. Every time my mom is here (since he was 2) there is something going on that prevents a fun week of activities from taking place. We have plans for a few fun things that we have not been able to do.

Sunday, April 11, 2010

Nothing's Simple

John took the boys to Cleveland on Friday. Yes, I was home alone and I am a new person.

So now it is 11 pm Sunday night. They are on their way back with my mom. They called to tell me they are running late because Jerry woke up screaming and ended up throwing up all over himself. They had to get him out of the car for a bit to clean him up and calm him down and could not get him back in no matter what they said. He finally let my mom take him in her lap. Praying they have a safe trip. I don't like that he is in the front seat riding but I do believe that there might have been no other way. So then my mom goes on to tell me that he hurt his ankle or foot earlier in the evening and would not put weight on it. Yes, he just hurt his foot a few weeks ago but seemed to recover from that. So maybe that is hurting him and making him cry? I wouldn't expect him to have trouble in the car. The last trip that John and I had with him we did not hear a peep out of him the entire drive.

Tomorrow Jerry is supposed to go to his first park district class...Kid Rock! So we will see how he does with his leg and if we go to music class or for an x-ray. I can't wait to see him to make sure he is OK.

Wednesday, April 7, 2010

It's official!

At the doctor's office today Jerry weighed 20 pounds and 11 ounces. That is with his shirt and diaper so probably, more accurately, 20 and 8. So now it is really ok that his car seat is facing forward. I took him just for weight because I knew he was gaining and I wanted an official record of it before he lost it somehow. I think I have forgotten to write this but an average boy his age would weigh 27 or 28 pounds. I guess he has got a way to go but we are excited about every little bit. He is getting quite the 2 year old temper to go along with the weight gain. He insists on doing everything himself! He has been asking me "WHYYYYYYYYYY?" for a while now when I tell him things must or can't do.

Friday, April 2, 2010

gaining again!


















Jerry's weight on the scale at the doctors yesterday, showed no gain since his appointment there 3 weeks ago but we know he was gaining and lost it when he was sick for 3 days. The last few days on our home scale he has been gaining. He has been playing hard and eating pretty well. He has not complained of any tummy aches in the last few days and has been very happy. I think the mirilax was maybe bothering him and just took a bit of time to get out of his system maybe. He also has been sleeping pretty much through the night.. waking at 4 or 5 and then going back to sleep until 6:30 or 7. Today he slept until 7:40...that never happens!

The shots he had yesterday were the last ones! So nice to put that behind us for a while. The report from his GI x-rays said everything is normal. Now we just see how much consistency we can get with eating and weight gain.
In the top right picture, Jerry is wearing an Edward Hospital newborn side snap t shirt. Can you believe it? He is almost 2!! I am used to how small he is so sometimes things like this just hit me. He must have come home in a smaller one than that though at under 5 pounds!








Wednesday, March 31, 2010

Jerry likes barium!!


That might be an exaggeration but he did drink enough, with just suggestion, to get the pictures done. I was in shock. Thanks for all of your thoughts and prayers. It was rough but way easier than I had anticipated. He was very tired from getting up early and not drinking anything so I think that helped. It was sad to see him strapped down on the table but he was much more calm than I thought he would be. He seemed to almost understand what I was telling him...pictures of belly, no ouchies, special milk for belly pictures. He was kind of crying and singing Barney songs at the same time! The doctor said that everything looked ok but he would have to look a little closer to be sure. It is good if nothing is wrong but at the same time I wish there was something to fix! However, he was happier today than he has been in a while and did not complain of a belly ache for the first time in a while. He ate a GREAT dinner and pretty good the rest of the day too. He is gaining back some of the weight he lost when he was sick last week.


Tomorrow there will be "ouchies" as he gets his monthly synagis shots. Hopefully we are almost done with that.


Saturday, March 27, 2010

The latest













































































Isaac gives little bro snorkeling lessons...the extent of our "excursions"













































































































Jerry slept through Grand Cayman














































































THE CRUISE


Not my kid
So, JJ was kind of sick most of the time, we switched him to a new antibiotic. He had some fun but did not feel great a lot of the time. He did not eat more than a few bites of food the whole cruise but enjoyed throwing silverware at our servers who kept bringing him more things to try. It was cold most of our trip, but Isaac and I forced ourselves into the pool one day about 3. That would be the last time anyone on the cruise could enjoy the pool for at least 24 hours. I warned Isaac about the salt water in case he got it in his mouth...not helpful. In our playing around, Isaac gagged on a mouthful of saltwater and puked right in the pool. I hoped it would dissolve but no luck...it just floated right on top. No one seemed to notice but I reported out incident to the towel service. I just couldn't believe this was happening because a friend and I talked about how there is no chlorine and it would be so awful if YOUR kid pooped or puked in the pool and they had to drain it!! So we watched from our loungers as the workers skimmed the water with some people still swimming. A little later we saw one worker asking some swimmers for their room numbers and names. He seemed reluctant to tell them why (they were still in the pool!) and just kept asking and telling them it was a procedure. Finally, he told them and they jumped out pretty quick. Later that night, the pool was covered with nets. The next day the pool was empty!! As we approached Grand Cayman it was warm and people could swim....it there was water in the pool! We went on the island and the pool was filled when we passed by later that evening. The hot tubs were closed the whole cruise for "modification" so that was a bummer.

More Puke
Isaac was air sick getting off the plane and then sea sick the first day with some throwing up involved. The second last day he was very sea sick and threw up a few more times and needed an infirmary visit to get some meds. The seas were really rough. We could hear the waves banging on the ship really loud and they had bags taped around the ship for people like Isaac. I was a little queasy but had on a Rx patch. My mom had no side effects from this but it made my eyes so noticeably dilated. I couldn't read a menu or the phone. Better than sea sick for sure.
Choppy seas, choppy haircuts


I really was ready to have JJ's hair cut for a few weeks before the cruise but with he and Isaac sick it was hard to get out of the house to do it. So we decided when he started feeling better on the cruise to get it done since the price was good. It was the ship spa so we figured it should be good. Oh noooooooooooo. Jerry's hair was just all different lenghts...choppy...nothing symmetrical about it. He still looked cute, like a little boy and we were hoping people would comment on his bad hair cut instead of calling him a girl. He was sitting very still so it wasn't him. The girl was really sweet and seemed a bit nervous about cutting Jerry's hair so we chalked it up to that and decided to have Isaac's trimmed up too (there wasn't too many activities for us to do since it was cold and windy). Isaac's hair turned out even worse!! Nice, large, uneven sideburns! I joked that maybe she served food the day before and did maintenance the day before that. When I took Isaac here at home to get his fixed the stylist said it could be true that they do not have to have a license because there is no jurisdiction on the ship.
Cousins in Tampa and other good points

We were so happy to be in Tampa a few days before and a few days after the cruise. We stayed with Uncle Eric, Auntie Bri, Cousin Douglas and new baby Brady. JJ started feeling good and eating pretty well the days after the cruise and that was a relief. Jerry was sad to leave the park and right after this puked in baby Brady's new car seat...I guess he broke it in! Sorry Brady!

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The food on the cruise was divine (I gained 6 pounds!..that's not on the good list) and Isaac LOVED Camp Carnival. They had great day care, activities, and even took him to dinner. They did not have anything for Jerry's age except one play time with a parent. He, of course, was thrilled to get in that play room his brother got to go to. Both boys loved running around the ship "exploring" and going up and down the stairs and in the elevators. Our favorite part was our upgraded room with a balcony. It was warm enough a few nights to sit on the balcony with wine. Finally, our friends Chrissy and Gina surprised us with tickets for some free drinks on the ship....that was great. Thanks girls!
FEEDING TUBE OR NOT AND TESTS FOR WED
Weight gain and periactin
Jerry somehow gained a pound and 3 ounces, mostly while we were gone!! That brought him to 19-15 on the dr. scale. That was just amazing since it was the first weight gain in at least 3 months. We knew he had gained a few ounces after starting the appetite stimulant drug but then he got sick and hardly ate so we were shocked that he could have gained so much. He seems to have grown an inch too! I haven't checked normal height for his age lately but average weight would be about 28 pounds. I've been meaning to put that in because I realize wt doesn't mean much if you don't know what normal is. The new drug, periactin, has helped a lot with his sleep difficulties, a usually unwanted side effect. It just takes the hyper edge off for him when he is trying to sleep. Maybe that has helped him gain weight. We have been doing 2 doses and now are allowed to add a third dose. We are still not completely convinced if it is helping him since he is still kind of up and down with eating. It continues to be so painful and frustrating to watch him have such trouble and sometimes no interest in something so that should be so automatic and basic. If he improves greatly and gains more weight when we add the third dose we will be more sure and hopeful about periactin.
We saw the surgeon, Dr. Renyolds, to discuss the feeding tube that would go directly into his stomach. She was so kind and Jerry was pretty comfortable and never cried while we were there. The exam was limited so that was good. We will wait and see if Jerry continues to gain weight before scheduling the surgery. I know he would get through it and be fine. But it is surgery and we would like so much to protect him from it if he can gain the weight he needs and have more time to forget his painful past with eating.
GI tests set for Wed
Wednesday we go for upper abdominal x-rays. JJ will have to drink a couple of ounces of barium and lay flat for the x-rays. He will not be able to drink anything for 4 hours prior to our 8:30 appt. The first rough component is going to be driving the 4o minutes or so and telling him he can't have his bottle in the car. He always drinks his bottle in the car and will just be so confused about me telling him no. I am sure he will be anxious from the beginning and will probably not like the taste of barium. Thirdly, he will be crying which will lead to puking (he does this from crying) all while they are trying to get him to lay down and drink barium. I talked to a really nice girl that does the testing and she assured me that they have seen all of the these things. She admitted it can be rough but that they almost always get it accomplished somehow. They will not give any sedatives because it may give inaccurate results. Now I am less afraid of the g-tube and more afraid of this x-ray testing. I guess this will make the shots we have due next week no big deal. Since Jerry is complain a lot "belly hurt" lately and gagging a little more than he has in a long time, I am anxious to have things checked out. I think the belly aches are from the mirilax so I am not giving that any longer.

Just precautionary, we will also have a test done for cystic fibrosis. The first sign of CF can be slow growth. Usually though, those kids have a great appetite and still don't gain.


RECENTLY....
JJ started a fever on Thursday afternoon with some congestion. His heart rate and breathing were really fast and I was starting to worry. Keeping the fever down helped with the symptoms and his fever did not return last night after going to bed. Wow, that was an easy one!! The only problem is he lost weight that he had gained.
Last night, he tripped on some bags of groceries and must have twisted his ankle. It was over an hour before he would attempt to put weight on his foot and he then limped and cried. It seems to be getting better today; he is walking a little funny but seems to be forgetting about it and there are not really signs of a break. If he continues to walk funny I'll have them get a picture of his ankle while they do his belly!! Kind of kidding, I think it is fine.
We wish we would be seeing family for Easter or sometime soon. My mom was going to catch a ride with a friend here but now the friend is probably not coming. Anyone in Cleveland traveling to Chicago anytime, please let me know. I am sure soon my mom will feel like doing the trip alone but not quite yet.
HAPPY EASTER AND THANKS FOR CONTINUING TO THINK OF US AND OUR LITTLE MIRACLE!


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Monday, February 22, 2010

Update...Will we make it to the sunshine?






So, Isaac had one more day of a high fever and now just has the cough and the big time crabbies! I think he needs to get out of the house. I hate to send him to school because I am afraid he will get something new. Jerry started his cough Friday night but never got a fever...strange...but so good! I did bring him in today because his cough seemed pretty bad and we ARE leaving for the cruise on Friday! Turns out he had an ear infection. I was pretty surprised as he really seems very happy, just congested and coughing. It is good that he is on an antibiotic and that gives me less to worry about with him. I am so worried that we might not make it to Tampa. Isaac will be crushed as will all of us.

We started the periactin (appetite stimulant) on Saturday night (it's 2x/day). We noticed right away that it made him calm and sleepy. He only woke once that night to eat. We may have found a new use for this drug! He has taken naps without any waking and is just altogether calmer about going to sleep. A 2 hour uninterrupted nap should NOT be underestimated! Not like he's druged or anything...just comfortable and not edgy....can't quite find the perfect description..but anyway, it's all good.

As for the eating, he has been eating and drinking faster than usual and asking for food by name more often. He had a really good day of eating on Sunday but then threw up twice. He threw up once when he had a little coughing spell and then again when he wouldn't quit playing with the dishwasher door (he knows how to unlock it) and pulled it down on his head!! It hurt so he cried and threw up. I cried too. I just stood there in tears as all of his calories went down the drain. Now his cold has been pretty bad today and he is not eating well...still drinking formula faster than usual. I am still hopeful. Also, this seems impossible but, He has been weighing 18.6 or 18.4 on our scale...tonight....20 pounds!!! I am not really sure how or why but I think I can turn the poor kid's car seat around!! This week he goes to get synegis shots so we will get a weight at the doctors office then and it usually matches mine. He's been doing better at check ups and now shots again, ugh! I guess I am a little skeptical of the weight or else it would have been it's own entry. I called the surgeon's office today and they will call me back with an appointment time to start the process for the G-tube...but I am not giving up yet.

JJ's hair. I guess it's a mom thing. I know it's messy and moppy but to me there is something so cute about his messy baby look. I just have not wanted to cut it. I cut Isaac's at about this age but his was a little thicker, a few curls, and nicer looking. So last week I was really ready to take him but with Isaac sick we never got out. Today his bangs were in his eyes and bugging him really bad so I did a quick "trim" on the them. Oops! I wish he were old enough that I could say he did it himself. I knew I had limited time for him to be still so ...oh well. Now he will look like a dork in all of our cruise photos.


Pictures: HOW MOMMY GETS PACKING DONE


video: Friend Trish helped find this perfect shirt for JJ. Notice...nothing said about a G-tube!!


In this video, he does this eye rolling back thing...I don't know if what he could have been looking at...look strange to anyone else? Never saw him do it before.


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Saturday, February 20, 2010

Time has run out....G-Tube

The GI doc yesterday said that JJ needs to have a G-tube put in. This is a surgically placed tube into his stomach that will allow him to get special formula feedings while still eating as much as he wants by mouth. There. Now that I have accepted that (NOT!) I can tell you that I still have hope of avoiding it. We are going to try an appetite stimulant called periactin while we begin the process of contacting the surgeon for the G tube. I am praying that this is what my little guy needs. He has weighed the same for just about 3 months. He is far past the point at which most children would start a tube. I understand the necessity of it but wish there were more answers or a more clear picture of the problem. The best explanation so far is that it is a problem caused by his painful eating experience prior to his heart function improving and that he is having trouble changing these habits. Makes some sense and I guess the psyche is never easily understood, but it is confusing to me that he has days of eating more normally in between the spurts of not eating. He ate a better lunch yesterday than Isaac ever ate at his age. He ate a whole hot dog dipped in Catalina dressing, a whole gogurt, and a few apple slices.

So we will do what we have to do but I have my concerns that there is some other issue not yet identified. Hopefully, if there is anything else, the pretesting before the surgery will find it.

Isaac is still coughing pretty bad and had a fever of 102.2 yesterday. Doc said if there is a fever today he should get a chest x-ray. So far only a low grade one today. JJ was coughing a horrible barking cough last night but is clear of any other symptoms and seems fine today!! If he is going to get sick we hope he does it now and gets over it....we leave for our cruise on Friday!!

Tuesday, February 16, 2010

The eating rollercoaster




JJ started eating really well on Friday and continued until today when he was back to his old habits. I really thought this time it was going to stick! A mom I talked to a while back who had a child with ALCAPA said it took her daughter over a year to consistently eat normal after her surgery. She had the same ups and downs that JJ does but she did have a feeding tube.


video and pic: Jerry loves to sit "on I lap" for stories. ISaac loves to read to him but hopes JJ will soon know how to play big boy games!




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