It has been an interesting week as far as Jellybean goes. On Monday I went to the doctor because I had some cramping and then I hadn't felt the baby move. They did a quick ultrasound and we saw the beautiful heartbeat and a little leg kicking. It is possible that since I am incredibly sick my focus has been on my headaches and not the sweet little kicking. (about 5 hours after the appointment Jellybean was kicking pretty hard for about 3 hours!!!) The doctor offered to listen to my heart and lungs to make sure the cold hadn't settled in my chest. He lisened to my heart for quite a long time and then asked "have you always had a murmer?". I was shocked by this and he said that it was a little loud for his comfort and wanted an echocardiogram. I went and had that done yestarday. We went back to the doctor today because he wanted to do an ultrasound to make sure the baby was ok. The ultrasound tech pulled up my chart, saw that we saw a perinatologist and siad that she wasn't going to do a full ultrasound because the perinatlogist would do it. I thought it was ridiculous that she wouldn't follow the doctor's orders. So we weren't able to find out the sex of the baby today. We do have a detailed level 2 ultrasound in 2 weeks so hopefully we'll find out then. THe good thing though was that there was a perfect amount of fluid and on the scan we saw a HUGE stomach! These things are exciting for us because I had way too much fluid with Jack because his esophagus was in 2 pieces and we never saw Jack's stomach on an ultrasound because of the esophagus as well. Seeing that big round stomach was an absolute miracle to us.
Well, exactly a month to the day from our last trip to the ER we had another eventful day filled with medical challenges. Jack went down for his nap as usual but then had some difficulty breathing. I went in to check on him and he was limp and unresponsive. We couldn't wake him up. We called 911 and did our best to suction and had to so some rescue breathing. He was going from rigid to limp quite frequently during the whole ordeal but was ok when he finally woke up in the ambulance. Once we got to the ER he had a full seizure that required some serious medication to sedate him. They had to give him a double dose because the first one didn't bring him out of the seizure. They told us he'd be out for about 8 hours. Well, 3 hours later he was awake and wanting to eat my fruit. They did a CT scan that looked normal so they transported us to Strong for a neurology consult. They did an EEG yesterday before we left the hospital. I wish I had my camera because I know that tomorrow I won't believe that he slept through having his head marked, the probes attached and then being taped up. They came to give us the results and told us that there were some patterns that would be abnormal on an adult but were normal for some children. They want to follow up with an MRI in the next month.
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!
We had quite a scare on Tuesday night. Jack woke up at 11:30 with his teeth hurting so we watched a blues clues and I went to put him to bed at midnight. He got upset when I got to the crib and pointed to our bed. I knew that he just needed to snuggle. I put down pillows and blankets in case he rolled out of bed. Well, about an hour later he did fall out of bed. He didn't hit anything and landed on the pillows as expected. He let out a cry and then all of a sudden it stopped. I was holding him when it happened and he just went completely limp. I tried to wake him up but he just layed there in my arms. We ran out to the living room where I called 911. I started yealling at him, shaking him and pushing on his chest. I was about to start CPR when he let our a huge cough and started to breathe again. It took him a while to come out of it but as soon as he did he wanted blues clues. By the time the EMT's got here he was sitting up watching TV. We still went to the ER to make sure that he was ok. They observed him for about 2 hours and we were cleared to go home. It seems what happened is that his teething is causing an increase of secretions and when he fell out of bed it scared him to a point that the mucous plugged his airway and he needed some agitation to get it loose. It was a very scary situation and it was even harder that Philip was at work and I was alone. I am so thankful everything turned out the way it did. We are so lucky.
Jack has recently discovered how fun fish can be. After 2 years of showing him our fish in a bowl he has finally realized what he is looking at. He now will make an "f" sound and point to the fish. Last night Jack saw for the first time the swimming fish on the screensaver. He was so excited about it! He actually climbed off Philip's lap and on to the computer desk to get a closer look. The entire time he was squealing and making the "f" sound. It was really cute!
We had our appointment with our high-risk OB today and got some very wonderful news! Jack is only going to have one baby brother or sister! Some of you know that we have been worried about it being twins because of my size and feeling the baby move so early. Thankfully Jellybean is just making me fat and is incredibly active. We saw proof of that on the ultrasound! It lasted about 15 minutes and Jellybean was kicking, rolling, and literally jumping all over my uterus! We were able to record the ultrasound on DVD so we can watch it over and over. It is so amazing to see this tiny little baby moving so much. At one point Jellybean made up a game called "Kick the Cord". He/she got the cord wrapped around the arm and then tried to kick it off. At least our little one is creative because with 27 weeks to go Jellybean could get pretty bored in there. We hope to scan and post the pictures tonight but we may not get them until tomorrow. Check back again!
We are finally home from our wonderful trip to Texas! We had a great time visiting Grandma and Grandpa! Jack wasn't feeling his best while we were there but we were still able to do some fun things. He started to cut his first 2 year molar the day we left for the trip so he felt pretty uncomfortable most of the time. Jack's favorite thing to do on the trip was "GO!". He would walk over to the door, point at the car, and yell "GO!". If we didn't scoop him up and take him somewhere he would get very upset with us! We made a lot of trips to Sonic and Chelsea's which made me very happy! We were also able to go to the Houston Zoo and see the monkeys. Jack's eyes really lit up while looking at all the animals! We didn't get to see all the people we wanted to because of Jack not feeling well so I'm sorry if we didn't get to see you. We had so much fun visiting with everyone, including Great-Grandma Guernsey!
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!!!!
Happy Halloween everyone!! My sweet little dinosaur did such a great job! We went this afternoon and visited our good friend, Teagan, in the hospital and then went to trick-or-treat at the NICU. There were so many wonderful nurses that came out to see Jack in his costume. Then we stopped by a few friend's houses to visit and Jack did great for the most part. At our last stop he fell asleep in daddy's lap. The most peaceful dinosaur I've ever seen!
We have such a busy life the past 6 weeks. There has been so much going on. First of all Jack has been relatively healthy. We went through a period where Jack had horrible diahhrea caused by antibiotics. It went on for weeks and Jack ended up losing 3 pounds. We found out that the antibiotic destroyed his intestines. It caused a permanant lactose intolerance which has put a bump in the Blenderized diet. He's now back to a full BD using Lactaid instead of milk and we have found some creative calorie boosters. He has gained 1 pound back and is still gaining.
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!
The effects of Hurricaine Ike has now reached Ithaca, Ny. No, not rain or wind but the reality that we will not be visiting Houston next week. My family was suprised to find that they were one of the firsts to get their power back. Everything was right on track for our trip. Then today a transformer blew because their neighbors allowed their bamboo to overgrow and it touched the transformer. Because of this 10 houses lost power, my parent's house included. There are still millions of people without power in Houston so there is a long list of areas to restore power. They are trying to service grids with the greatest amount of people first. Because they had thier power restored and now there are only 10 houses without power they are last on the list. Their power company is estimating 2-3 weeks before they can get their power restored. We were supposed to go down a week from tomorrow. This is such an upsetting turn of events. We were really looking forward to our visit. My parents haven't seen Jack since July and they wereVery excited to see him walk for the first time. The video just doesn't do it justice. We are hoping the airlines will be able to reschedule our flight. If not, I don't know what we'll do. If Jack wasn't so medically fragile we would go down anyway but he requires power to be able to use his pump, his nebulizer, and charge his suction pump. All things needed to save his life. I'm praying for a miracle.
Wow, what a week we have ahead of us. Tomorrow we have 3 therapies and an appointment with the dietician. Tuesday we will be in Rochester all day for pulmonology. Wednesday we have 3 therapies again and then Thursday we are back in Rochester picking up Philip's mom. During this time I'm supposed to prepare everything for Jack's birthday party on Saturday. I'm busy busy busy!!! I'm starting to work on Jack's year 2 montage. I hope to get it done by his birthday but if not I will post it as soon as I can.
We've made some significant changes to Jack's diet! He is almost completely off formula!! We are now giving him real foor blended up through the tube. Anything Philip and I would eat now Jack can eat too! It is such a simple concept but the doctors are so against it. Our pediatrician knows me so well that he agreed to help me through it because he knew that if he disagreed with me I'd still do it anyway. He is now interested in learning more about it. Jack's health has significantly improved since starting real food. We started by adding some applesauce to his formula and over the last 2 months we have transitioned the formula out and now he is on all food during the day. He still gets some formula at night but we have significantly decreased it and it won't be long before it is gone altogether. We've now gotten to the point where we had to purchase a commercial grade blender to get the mixture smooth enough to go through the tube. Luckily for us, the company offers a medical discount for tube fed children. The blender still cost over $300 but now we can make appropriate meals for Jack.
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.
We got the bill for Jack's Life flight today. We've been witing a long time to see how much a life flight costs. We were blown away with the figure! Any guesses on how much a 74 mile life flight costs??? $20,000!!!!!!!!!!!! Some people don't even make that in a year! That breaks down to $551 a minute! CRAZY!! We are so very fortunate to have a wonderful insurance plan that pays for it 100%. Let's just hope we don't have to have any more of those!
Ok, We've been holding off on posting because we've been waiting for some special pictures to go along with a post but this one can't wait. We waited 3 days to post this special news because the last time we posted right away the behavior did not continue. Well now we have seen this "behavior" for 3 days in a row! Jack is now consistantly walking!!!!! It started on the 20th. We were shocked to see him let go of the tv stand and walk over to us! We didnt freak out on the inside but you better believe our insides were doing kartwheels. We felt that if we made a big deal it would hinder the progress and we were right. He acted like he had been doing it his whole life and it is no big deal. He continued all day and even carried his container of play food all the way across the room! We are just completely shocked! Tonight he walked all the way across the house, opened the back door himself, and stepped right out onto the back deck to get his daddy! It was incredible!!!! Absolutely incredible!!! We are so so happy. It has been a long 23 months but all the therapy and working with him has been worth it! We truly believe that the walker has helped him to gain his balance and confidence. He will still need the walker in new and unfamiliar places because it helps him with his depth perception and keeps him safe but now we know he can do it on his own!!! Enjoy the video!!!
Now that Jack is doing well and we have grandma and grandpa to run around with Jack, Mommy finally has a minute to update the blog! I didn't bring my computer to Texas with me so I'll have to update about our wonderful trip to Illinois when we get home. I can, however, update you on the crazy antics of Jack in Texas! For example, Philip's wonderful aunt Tracy and uncle Neal drove up to spend the evening with us. We had a wonderful time visiting and had a wonderful dinner (thanks, mom!!). Towards the end, Jack went out the front door and I took the walker with us and put it in the cul-de-sac. Jack didn't want to be out there he wanted to be on the sidewalk so he took his walker right up to the curb, lifted the front wheels up and took a step up onto the sidewalk!! I ran to get the camera to catch it on video in case he did it again. He did!! He also tried to go down off the curb but needed a little help to do it. He is amazing!!
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!!
Suprisingly, we are now home with Jack. It all started on Wednesday. He fell asleep in my lap and had a very hard time getting a full breath in. Luckily, our nurse was with us and she went with us to take Jack to the doctor. By the time we got there he was ok. His sats were fine and he was breathing ok. The dr. suggested more xoponex. That night I stayed up to listen to him. He did have a hard time. The next morning he was still having trouble so I took him into the Dr. and they called an ambulance to take him directly to the hospital. Once there they set him up with oxygen, xoponex, and blood work. He was working so hard to breathe that he couldn't even open his eyes. He layed there limp in our arms not being able to breathe. this hospital is awful. There is never a doctor on the floor, just nurses and the dr is on call. We did not see a doctor once even after repeatedly demanding. The dr. was in 3 back to back c-sections and couldn't come ot assess the situation! I started to throw a HUGE fit and they called a different doctor and I could only speak with her on the phone. I asked for Jack to br transferred to Rochester because we didn't feel comfortable with his treatment there and she denied the request. She told us the Dr. on call would have to make that determination. Once he finally came in Jack was doing worse than ever. His o2 sats were fine with the oxygen but his breathing had slowed and he was retracting horribly. I was terrified. I thought I was going to lose him. I started to take deep breaths in his hair to remember how he smelled. To say I was terrified was putting it lightly. The doctor called rochester for a life-flight but we had to wait for them to assemble their team and then fly to us. They told us that once the team was there they'd intubate and take him to the PICU. Once the transport team arrived you could see the looks on their faces. They were upset they hadn't been called sooner. One guy did an arterial blood gas and checked his IV to give a sedative and the other gave an inhaled medication called Racemic epinepherine (sp?). He did two treatments back to back. within 2 minutes Jack was opening his eyes, not retracting as much, and wanting to read a book! The respiratory therapist at the hospital quietly mentioned to us that the last shifts therapist had been trying to get the doctor to order that same medication all day and he refused. They took him without intubating but couldn't make any promises about what would happen during the flight. We were not allowed to ride along with him. It was so incredibly hard! They also had some severe weather to deal with and didn't know how the flight was going to go. We had to get in the car and drive 2 hours to Rochester. It was 11:30 p.m. by the time they took him and so we didn't get to the hospital until well after 1 am. To our suprise Jack was not intubated when we saw him! He had high flow o2 and they were doing breathing treatments every 30 minutes. There were lots of different drugs and the combination of them worked. He was still retracting and had stridor but it was not nearly as bad as it was before and they were able to control it with the Racemic. They weren't able to tell us what was wrong. They said it was probabl some sort of virus and the best they could say is acute respiratory distress and reactive airway disease. He progressively got better and by yesterday he was completely restless. They had him hooked up to all the monitors and he had an IV in his foot so he couldn't get down to try to walk. they finally started him back on his food at full feeds and he tolerated it so we were able to d/c iv fluids and they removed the foot board so he could walk. He felt so good to get up! He ran around the PICU unit! During rounds that morning they decided that if we had lived in Rochester they'd let us go home but since we had a long drive they wanted to keep him another day. When we found out that we were like "what does a 2 hour drive have anything to do with going home???" they said they wanted him to be spaced out on the xoponex a little more. Ummmm...he's getting xoponex every 4 hours and it only takes 2 hours to get home! Plus, we had our portable neb in the car! After we explained the logic to the doc he agreed to let us go home. Jack had a great night! It has been a long long time since he had breathed that quietly at night. Today he was running around outside and going down his slide. He's back to his normal no nap self! We are so incredibly thankful for the way everything turned out. It could have been so much worse!! Jack has incredible resilliance. He's just a true miracle!
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!!!!!!!!!
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!
Last night Jack was a very tired boy! He had woken up at 4:45 and went the whole day without a nap. By 5:30 he was pretty much gone. Philip and I, the good parents that we are (wink wink), decided to video tape him. He wanted to watch Moose so bad but he was just too tired. It was super cute! Check out the video!!
So here's what happened...Jack coughed all night long. In addition he woke up screaming at 2 am. I immediately picked him up and his little body was shaking. He calmed down for a minute or two but then started this involuntary jerking and screaming. We weren't sure if it was pain or a seizure or what. It happened a few more times and then he fell asleep.
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.
I lost my baby boy today. We gave him his first real haircut today. We had trimmed it several times but it really needed to be cut. We bought new hair clippers today and when we turned them on they were incredibly quiet. We thought we'd try it on Jack. We got part of the top done but then was freaking out too much so we had to stop. He looked really funny while Philip and I decided what to do. We turned on Noggin and tried to cut it with scissors. As son as Moose and Zee came on we were able to make some real progress and we could actually do a good job! It still needs a litle polishing but we decided to get it while he's asleep. He doesn't look like the little boy he did this morning. He now looks like a handsome man. It almost made me cry!
Our PT was not able to find a walker for Jack to try. Instead, she brought this Little Tikes shopping cart. Jack doesn't really use it much at home so I had the idea of taking it to the grocery store. Our OT decided to come with us when we gave it a try. We went to the furthest aisle with the least people. Jack got right down and started to push it. He used one hand to push the cart and one hand to hold on to Monkey. He didn't like to be in the quiet aisle. He wanted to be where all the action was! He walked around the store with minimal assistance for almost 45 minutes! It was incredible! At one point he even let go of the cart and took 5 independant steps to reach a Tide display!!! I was so proud of him! We'll be buying one of these carts for him for sure! Sorry this video is sideways. I keep forgetting that you can't turn it once it is shot. It's still too cute!!!
Again, this is before Jack got really sick. It has been a long time since I've been able to post!! Jack really enjoyed going to the park. We took a long walk around Cayuga Lake while Jack slept and then we went to the toddler playground. Jack LOVED playing on the structure and even sliding and walking on the woodchips! I was not in the park with my child! He was someone else that day! It helped they had musical chimes to play with. He played for about half an hour and then we went home. He slept really well that night!
Before Jack got really sick we were able to go to the Vet school open house. While at the petting zoo Jack didnt freak out once! He even reached out to touch a baby chick!! He was really good as long as he was holding his moracca!
Well, we are in the hospital. Jack has had a cough for some time now and 3 weeks ago it started to turn into an infection of some sort. We treated with 2 different oral antibiotics and antibiotic injections. The injections worked for 4 days and then everything came back worse than before. Today at our Dr.'s appt. it was decided that we were going to have to be more aggressive and and admit him to the hospital for IV antibiotics. They did a CT scan of his sinuses which revealed a terrible case of sinusitis which apparently is resistant to antibiotics. The poor baby is so good through all this. It could be anywhere from 4 days to 3 weeks. Hopefully if it is going to be longer than 4 days they will be able to find a PICC line small enough for him to replace the IV and then we can do the treatments at home. I really hope so because the treatments are for 15-20 minutes a day and then the rest of the time is spent just hanging out and having the nurses bug him every few hours for vitals. I just can't wait to be home. The really bad news is that they had to put his IV in his foot. Those of you who really know Jack know how that is the end of his world. He spends almost his whole day on his feet standing at his toys and making mommy walk around with him. Today he slept all afternoon but tomorrow will be a different story. Wish us luck!
So Jack is now 18 months old and is not walking independently. We got to the point where we started to think that a walker would be beneficial to him and may give him the freedom to be mobile. I asked the CHARGE list about their experiences and got some wonderful advice in return. Then, tonight, Jack decided it was time to prove mommy and daddy wrong. He took many steps on his own and kept his balance most of the time! I was able to catch a good portion of it on video to share with you all. I hope you enjoy it and realize what an accomplishment this is for Jack.
Yesterday Jack and I headed to Syracuse for 3 appointments in a row. First we saw the nutritionist and the GI. They were really impressed with how Jack is growing. I just had a hard time with his percentage on the growth chart. I see him day to day and he seems sooo big to me! It's almost crushing when I think about my big man and hear the doctors tell me that he is only in the 5th percentile. I really expected more. At least he is still growing. We did have some progress though. We have switched him off of Neocate, which is an elemental formula with all of the protiens broken down, to Vital Jr., which is only partially broken down. So far he has done really well on it. The hope is that if he tolerates the new formula for 6 months then we'll be able to switch him to pediasure. His new formula is really easy because it comes pre-mixed in 8 ounce cans. It is a french vanilla flavor which is a nice switch for us from stinky Neocate. It smells so good I would even drink it. It smells like vanilla cream cookies. yummy!
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.
We had an amazing chocolate tasting party tonight. We had a wonderful group of friends over and Life's So Sweet Chocolate catered the sweets. We had Bailey's Irish cream truffles, Chocolate dipped peanut butter pretzles, White chocolate dipped pears, Aztec truffles (with chili powder), dark chocolate cocoa truffles, dark chocolate dipped dragon fruit, and berry clusters with dark chocolate, raisins, golden raisins, dried cherries and currants. The chocolate was amazing, the conversation was great and overall it was a wonderful night. Thank you to everyone who came!!!
Sorry I haven't been able to post for a while. We have been living crazy lives and then there is always the fact that Jack Loves the computer. We'll start with two weeks ago and move to today. Enjoy all the pictures and videos!!
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!!
Glasses!!!
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!
Today was Philip's birthday. We are exactly one month apart so now he's finally in the quarter century club. We celebrated the day by having homemade cinnamon rolls when he woke up, going to the inaugural meeting of our support group, relaxing, and having a wonderful dinner. Later we will enjoy the pumpkin swirl cheesecake I made for him! I think he had a great day.
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!
Last Friday Jack started to use his first sign! We've been working on many signs since he was about 3 months old and finally he signed "More"!! He didn't want more but he signed it! He's been doing it a lot in the past few days but we haven't been able to catch it on camera until today. The most exciting part is that while on camera he signed his second sign for the first time! He is now signing "all done"!!! We'll still have to work on the meaning but it is very exciting to see him making this progress! Now we're working on ball, kisses, play, and others. I hope the progress continues!
Jack has been making great strides in therapy and working with mommy. He has been learning to climb. He wasn't very interested in it at first but once we found a spot where he was truly motivated he picked up on it fast. We started by putting his steps at the end of our bed and letting him climb up. He loves to play on the bed and was excited to try to get up there himself. Then, on Saturday, I was cooking in the kitchen and Jack climbed up the steps into our arm chair to be able to watch me. He is doing so well! In this video we are working during OT with both the steps and a wedge. We even had a little game of peek-a-boo! I couldn't get the video to turn the right way on screen but it doesn't seem too bad. Way to go Jack!!!
Jack was born on September 16, 2006 with CHARGE syndrome, a rare genetic condition. He was born with multiple serious birth defects. After a lengthy hospital stay Jack came home and has far surpassed any doctors diagnosis. He is an amazing child!
