Wednesday, December 31, 2008
Wednesday, December 24, 2008
On Tuesday we were supposed to go to the grocery store after Jack woke up from the nap. Well, the seizure kind of messed up that plan. The problem was that all grocery stores closed at 6 pm on Christmas eve and I was missing at least 1 ingredient in every single recipe for our Christmas dinner. The doctors were really dragging their feet getting together the discharge papers so we finally went out and told them that we wanted to get to the store before it closed. They finally got everything together and we signed the discharge papers at 5:05 pm. We ran out of the hospital and drove to the Wegmans in Rochester. We had never been there so we had to manage the chaos and still find everything we needed. The funniest thing though was that the markings from the EEG, which were 20 bright blue crosses, were still on Jack's head! It did not come off with a warm washcloth like they promised. We had to wait until we got home to scrub his head with shampoo. I can't imagine what people were thinking at the store!
We then had an uneventful 2 hour drive home. Jack, surprisingly, stayed awake the whole trip playing with his toys and reading every single book we had in the car. We were all so thankful to be home before Christmas morning.
It is amazing how quickly Jack recovers from his various episodes. He usually falls really hard and then bounces back very quickly. I mean, back in June, he was life-flighted and was moments away from being on life support and 4 days later he was discharged straight from the PICU. He is truly an incredible miracle. We are so lucky to have him for our son. Jellybean will have a wonderful brother to look up to!
Thursday, November 27, 2008
Saturday, November 22, 2008
Tuesday, November 18, 2008
Sunday, November 16, 2008
Jack is so glad to finally be home and spend some time with daddy. We've got a big week coming up with lots of appointments for Jack and the baby, who we now call Jellybean. We'll be in Syracuse most of the day tomorrow and Wednesday for Jack and then in Elmira for a 3 hour appointment on Tuesday and in Ithaca for a 3 hour appointment on Thursday for Jellybean. We are very excited for the appointment on Thursday because we will have an hour long ultrasound! It is going to be wonderful to finally see our baby!
We've also got a lot of Thanksiving shopping to do. I'm doing my usual traditional Thanksgiving dinner for 12 to feed Philip and I. We are hoping to have guests this year but we're still not sure. If not we'll have our usual leftovers for a week!
All in all, we had a wonderful week last week and we have a busy week this week! I hope we are all able to survive!!!!
Friday, October 31, 2008
Monday, October 27, 2008
We have had many doctors appointments and have been traveling to and from Rochester and Syracuse a lot. Sometimes I feel like I live in my car. I guess it's good that I love driving it!
Jack has done so many new things in the last few months. He began and continues to walk which is a HUGE accomplishment! He is now really interested in food. He literally will attack anyone that has food. He also sees Philip and I sitting at the table and he wants to be right there with us tasting the meal. He gets frustrated because he wants to use the same forks that Philip and I do. We just can't believe how far he has come with his eating. He still hasn't learned to swallow food but he's getting really brave in the types and textures of food he's trying. He is also addicted to Blue's Clues. He wakes up every morning and all he wants to do is watch an episode while eating his breakfast. I've bought him a Blue's Clues book on Amazon and I can't wait for it to get here!
We have some big news in our family. Jack is going to become a big brother in May. Things are going well in the pregnancy. We've got the normal pregnancy stuff and I'm already showing. We are very excited to have a new baby on the way!
Here are some pictures from this summer and fall.
Monday, September 15, 2008
Sunday, September 7, 2008
Tuesday, September 2, 2008
I've been keeping myself busy cooking and freezing all sorts of yummy meals for Jack. They are so delicious that I want to eat them! Right now Philip and I joke that Jack eats better than we do! Just yesterday I made him some fruit bars that had apples, blueberries, cranberries, carrots, and oats. Then I made some potato, spinach, leek puree, and some pasta stars with tomatoes and cheese. It was so much fun!
I really think that for the first time in his life he truly feels food. It has to feel so much better having a full belly of food and not liquid.
Saturday, August 23, 2008
Friday, August 22, 2008
Thursday, July 3, 2008
We've been up to a lot of other things too. We went downtown to an area called Harwin. They have a lot off little shops that sell knock off stuff. They have tons of little jewelry store that are just overwhelming! I was looking for some jewelry to go with my dress for the wedding we're going to on Saturday. I found a beautiful set! I also got a pendant, a pair of earrings, and a ring. We had a lot of fun. We've also visited with Jack's Aunt Laura, Aunt Tina (my best friends), and Miss Sandra. We had a wonderful visit and good Lemon cookies (again, thanks mom!). THe first day we were here I went to get my hair cut. I knew I wanted to get a little cut off but I wasn't sure how much. I told her about where I wanted it and she made the first cut. She paused, looked at the lock of hair and said, "oh, that's too bad". I knew exactly what she meant and I asked, "how much more". She said, "2 inches". I told her to just do it. I was able to donate my hair to Locks of Love! Plus, I got a really cute hairstyle!
Tomorrow we are going to go and see my brother's new house and then go and see the fireworks out on the lake. Then Saturday we are up to Dallas to see my other brother's new house and to go to the wedding! We've got a lot of fun stuff coming up!!
Tuesday, June 24, 2008
Thank you all for your thoughts and prayers. It was a scary time in our lives. So many of you have been there and know what it is like. Thanks for all the support!!!!!!!!!
Thursday, May 29, 2008
Jack's PT was finally able to find a walker Jack's size. The shopping cart was working well but it wasn't as stable as it should have been. Jack wasn't too interested in it at first but yesterday he really took to it! We started to put him in it every time he took our hand to walk. It clicked yesterday that he can actually go where he wants and he doesn't have to try to convince mommy and daddy to follow him. We took the walker last night the The Boatyard Grill to celebrate our anniversary and Jack gave us the best present ever! He walked around on the deck of the restraunt in the walker! It wasn't busy but the people that were there seemend to enjoy how excited he was about it. We also learned a valuable lesson. We have to take away Monkey in order for him to hold on with both hands. He seemed to be ok with it. Later that evening we took the walker to Wegmans and let him go. He walked around the store for half an hour on his own! He even followed us as we shopped! It was so cute! We are so proud of him!
Today I took him outside and he walked in the walker on the driveway! I couldn't believe that he actually did it! We also took it to the library and the park today. He loves his new found independence. He acts like he's been using the walker for months. As soon as he figured it out he took right to it and went off on his own! Today at the park I was talking with friends while Jack was walking and he started going down the path paying no attention to how far he was getting from me! He just kept going and as I came up behind him he did a little jump step and tried to get away! It was really really cute!!
This is the best thing we could have done for him. We have seen an amazing change in his personality. I am so happy he feels so independent!
Thursday, May 15, 2008
When we got to the hospital this morning there were green rivers of snot running down his face. No matter how often we wiped the rivers kept flowing. When we got up to the reception desk on the surgery floor the nurses took one look at him and went to get the anesthesiologist. He came in and said he was uncomfortable doing the surgery in his condition but he wanted to speak with the surgeon before they sent us home. The surgeon wanted to see Jack before we left but he was in surgery so we were going to have to wait an hour. They had a blues clues movie on for Jack so we said OK. He came in about 40 minutes later and agreed with the anesthesiologist and declared the surgery cancelled. He wanted to talk to our pediatrician to change his antibiotic. So while he was off doing that the nurse gave us some pedialyte to give to Jack so we did a bolus. About 30 min. later the anesthesiologist (I haven't mentioned that he didn't speak english andwe couldn't understand a word he said) came in and told us that they were still going to do surgery but a different one. He wasn't able to give us any details he just wanted us to give consent. We of course refused. We weren't going to give consent to an unknown surgery when a few hours earlier he was very uncomfortable giving him anesthesia. We wanted to find out what the procedure was. I went out and paged our pediatrician directly because I wanted to know what they talked about. Our pediatrician wanted him to have an ear fluid culture which needed to be done under anesthesia. He believes that even though the infection is in his sinuses the bacteria would show up in the ear fluid. When we finally talked to the ENT he said that if they were going to put him under and make a hole in his ear drum to collect the fluid they might as well slip a tube in there. We started to talk about his secretion issue and I wanted to know what hadchanged in the last few hours to make them think Jack would be fine. A few hours before they were adamant that it was not safe to put him under. Why the change? Our ENT said "I'm going to step out of my doctor role for a second. Do you want my personal opinion?" Of course, I said yes. I completely trust him. He said "If this were my child and I was in your shoes I would not do the procedure". That was enough for me. He said that right now we are managing Jack's secretions at home and it was clearly not affecting his lungs. The ENT said that if we did the procedure today we would have a 20% chance that his respiratory status would be compromised. 20% is a lot! So we packed up Jack and brought him home.
I hate having that feeling of knowing that you have to make a decision and neither option is a good one. Luckily in this situation we had the option to walk away. I know Lesley was just talking about this with Ameile's trach. It is so incredibly stressful. Before we talked to the ENT for the last time the anesthesiologist was sort of pressuring a decision. Philip and I got into this huge fight right there in the room because I took something he said the wrong way. When you have such an intense stress you snap easily. We kissed and made up. :-)
One thing that did really bother me today was that the very first time the ENT came to see us he said his patient was still asleep on the table. The same thing happened with Jack's last surgery. The surgeon came out of the OR to discharge us when we had become friends with the little boy who he was supposed to be operating on. We saw them take him to the OR and at that time he should have been in the middle of the procedure. I can't believe a doctor can leave the OR like that! I know there are other people there but I never want to theink about the surgeon leaving Jack on that table. I think back to all his other surgeries and wonder how many times the surgeon left him. It is so hard to think about!Anyway, Jack is now home and doing great. They are going to try to reschedule the surgery to be in 2 weeks. We'll see what happens.
Sunday, May 11, 2008
Friday, May 9, 2008
Sorry this video is sideways. I keep forgetting that you can't turn it once it is shot. It's still too cute!!!
Saturday, April 19, 2008
Thursday, April 3, 2008
Tuesday, March 18, 2008
After those appointments we were able to go and visit all of the wonderful nurses at the NICU who cared so lovingly for Jack. It was so wonderful to see everyone again and for everyone to see Mr. Jack in his handsome man glasses. He has overcome so many obstacles so many people thought would keep him down. It's wonderful for all of the people who brought Jack through the hardest times to get to see him do all of his big boy tricks. I love all of you guys!!!
Then, we went to the Nephrologist (which is Jack's kidney doctor). As usual, Jack freaked out when they tried to take his blood pressure. We got no news but they did discontinue one of his medications. They are going to try to get into the OR on April 9th while he's having surgery to take an accurate blood pressure. Who knew a blood pressure could be so challenging but that's just Jack's style.
Friday, March 14, 2008
A New Sweater from Grandma
I'm such a handsome man!!!!!
I can't figure out how to turn this picture but it is still cute!!!
Thanks for making me this very handsome sweater and hat Grandma Sharon! I really really like it! The Monkey buttons are really cute too!
Grandma and Grandpa Mac Came to Visit!
My mom and dad came for a wonderful visit this past week. It was wonderful to have my mom's cooking and not having to worry about doing the dishes or the laundry. It is wonderful that my mom comes all this way and still helps me around the house and does the grocery shopping and cooking. We had a wonderful time playing cards and doing things around Ithaca Even though we had 2 ice storms and spent a whole day without power. I'm glad you didn't freeze too much Mom and Dad!!!!
Another great thing about my parents coming is that they brought us 50 pounds of beef. That's right.....50!!! Beef is VERY expensive here in NY. We were at the grocery store while they were here and we saw a package of 2 NY strips for $21. My parents live in Houston and can get them for $1.99 per pound on sale. So, They stock up their freezer in the weeks before they come and bring us as much as they can fit in their suitcases. Hopefully it will last us until June when we go down and we can bring some back with us!
We're on the way to the airport to pick up Grandma and Grandpa!!! I'm so excited!!!
Thanks for my new concrete mixer Uncle Dennis!!!!
I love reading this story with my Grandma!
I really love shaking my new moraccas and playing with my other instruments. Thank you!!!
Thanks for coming Grandma and Grandpa! I had a great time!!!!
Another Trip to the ER
On Monday the 10th Philip woke me up at about 6 am because Jack's balloon in his button had burst sometime in the middle of the night and had come out. Jack's jammies and bed was soaked with milk. We woke him up and brought him out into the living room to try to get a better look at everything. Jack's stoma (the hole into his stomach) acts like your ear when you first get it pierced. Once you take out the earring the hole starts to close on its own. His stoma is the same way even though it has been 16 months since he got his tube. When we finally got a look at it we could see that it was closed. We tried for about 15 minutes to get the smallest tube in but we couldn't. The tube we had at home was not stiff enough to push through. We had to get him to the ER fast because if the hole completely closes then Jack has to have surgery to re-open it.
They were really good about getting us into a room right away. However, the nurse practitioner would not help Jack until we gave him his full medical history. I'm sure how all of you who've been in this situation know how I was feeling. The momma bear was hungry and a juicy human was messing with her cub. He told me it would take hours for it to close all the way. IT HAD ALREADY BEEN HOURS!! I looked at him and told him that if he wasn't going to help us then I'd just have to do it on my own. (I didn't say it that nicely) So I grabbed the 8 french tube and started to dialate the hole. Now, for those of you who are not familiar with tube sizes they go by even numbers. An 8 French tube is about the size of a piece of cooked spaghetti. Jack's stoma was a 12 French which is a little bigger than a pipe cleaner. After a lot of trying, I finally felt the skin seperate and the tube slid in a little further. We kept trying and trying and slowly we were able to get the smallest tube in. From there we had to wait about 15 minutes and then try to put in the 10 French tube. Philip, who has never changed a tube before, was able to dialate the stoma to a 10 French. Keep in mind at this point the nurse practitioner was still not helping and we had not seen a doctor. I was furious! Since when do you go to an ER and have to treat your child yourself? We had to wait another 15 minutes before we could try to get the 12 French button in. Shortly before Philip and I were going to try the doctor came in. He saw Jack's button laying on the bed and asked "So, What is that exactly?" I wish I could have seen my face because I am sure that my jaw dropped open. How can a doctor not know what a button looks like? He had no idea how they even worked and asked us a whole bunch of questions about it. Then he proceded to tell us that he could put it in for us. Philip just looked at him and said, "No, I think we can get it in if you'll just hold him down". It was pretty funny. Here we have this ER doc holding Jack and the parents are performing the procedure. We were out of there in 2 hours, which is record time for the ER. It just goes to show you that the doctors are the ones that hold you up. The only good thing about the trip was that we left with 7 new tubes of various sizes so that next time we'll have brand new tubes with rigidity to get in there. After we got home Jack took a nap when we got home but he was a wonderful happy boy the rest of the day! We even took him to get his pictures taken that afternoon and they were the best we've ever had taken!
My New Water Table!!
I bought Jack a Sand and Water table the other day even though I know that he hates water more than anything in this world. I was certain I was wasting my money but out OT thought it was a good idea for him to be able to try and I agreed. The day I bought it out OT came and I put it together while she worked with Jack. Finally he noticed I was doing something and came over to check it out. He was banging his hands in the dry table so we thought we'd see what happeded when we added warm water. To our suprise Jack stood there and splashed his hands in the water! He played for 45 minutes! We were SHOCKED! This child could not be my precious Jack who hates the water! The table came with a small boat and a bulldozer. He really loved playing with the boat but was adamant about not having the bulldozer in the water. He'd get upset if we ut it in and then throw it out! He's so silly! I was able to take a video and some pictures of his first time playing with the table!!
I have been working so hard to get Jack to wear his glasses with no success. But then on Wednesday we had a session with our vision and occupational therapists. They made him put on his glasses and after about 15 minutes of protest they got him distracted and he wore them for about 30 minutes. Then, yesterday morning I put them on him with little protest and he wore them all day!!!! He did the same today! It seems he has realized they actually help him!
Sunday, March 2, 2008
More on the support group... A few parents recieving therapy services from EI expressed a desire to meet other parents with children with special needs. We were finally able to meet the wonderful families today. Most of the kids played well with each other. All except Jack. He had a problem with sharing his toys and decided he'd rather be in crazy man mode than play with my new friends mode. It was ok though. Hopefully he'll play a little better next time. It was just so nice to be able to meet some other people who knew what it is like to have a medically fragile child. It was interesting to find out that two of the families had met while inpatient at the hospital and we had met one of those families at the doctors office and now we are in the same group! Small world! I can't wait for our next meeting!