Surgery Update

Just to let everyone know Jack did come home yesterday (Saturday). On Friday he was still pretty loopy and doctors started talking about history of seizures. Jack doesn't have any history of seizures so they said they would keep a close eye on him and continue to monitor him. He came off the vent Friday morning and stayed off the vent all day and all night, which was the requirement in going home. Saturday morning he woke up still a little cranky but smiling and happy! It was a couple of scary days but he made it through like a champ! Now just a loonngg six weeks of recovery with no bottles! Yikes!!

Jack's surgeries

Just an update as to how Jack's surgeries have been going. He had the first of two surgeries 3 weeks ago. The first surgery was to lengthen the rods in his back. Back in January the exact same surgery landed us four days in the hospital, so we planned for another 4 day stay, with 2 days on the vent. Wouldn't you know that Jack came off the vent immediately after surgery and went home the next day! It seems everytime we think we might have Jack figured out, he throws a curve ball! We were of course excited and surprised at the same time.

The second surgery took place this past Tuesday. It was the cleft palate repair. Jack again came off the vent right after surgery, but within a few hours Sam and I could tell he was struggling and requested he be put back on the vent. That was Tuesday and as of today (Thursday) he's still on the vent. I should probably back up a little bit in the story. On Tuesday both Jack and I woke up with a cold. After consulting with anesthesia they agreed to go ahead with the surgery stating that Jack appeared to be in good enough health to proceed. Before and during surgery they suctioned out a significant amount of secretions out of his lungs, indicating he was indeed getting sick. So post surgery, Jack was not only dealing with surgery issues he was also dealing with respitory issues. Yesterday they ran a viral panel on him and collected a sample from his trache to see if they could pinpoint the sickness. His viral panel came back negative (which only means he doesn't have a virus they tested for--he could still have a virus, we just don't know what) and his sample is growing bacteria. Only a small amount of bacteria is growing but as a precautionary they started him on two antibiotics to keep the bacteria from growing and turning into an infection.

Today Jack was in a drug-like state all day. The past few days he was on morphine and tylenol with codeine to help manage his pain. The drugs barely seemed to help as he was continiously cranky, irritable and mad. But yesterday was the last time he had received morphine and 1am this morning was the last time he had received the codeine. So the fact that Jack was so out of today was extremely worrisome to me because he didn't have any drugs in his system. As the day went on and his drowsiness and lack of alertness continued the doctors ordered lab work to check if anything was out of sync. All his blood work came back normal. So we can only assume he's still fighting an illness and is wiped out and loopy from that.

The hope for tomorrow is that he's more awake, alert, and responsive. If that happens we will hopefully trial him off the vent, which means we are one step closer to going home! I'll do my best to keep everyone updated!

Gabrielle's First Hair Cut!

Gabrielle's first haircut went extremely well. I had been saying for some time now that Gabrielle really needed a trim, but I kept putting it off. A few weeks ago we were talking about her hair again and I mentioned to her "Locks of Love", and that maybe she could donate her hair at some point to someone who really needed it. The subject was sort of forgotten until the beginning of this week when she started asking when she could give her hair to someone. I was really hesitant because growing up my dad didn't like short hair and so I had never done anything dramatic to my hair, other than the occasional trim here and there. On Tuesday, Gabrielle asked a million times when she could go to Locks of Love. So, with a deep breath and lots of reservation, I started calling around to different hair salons. With Locks of Love, 10 inches is the minimum amount allowed. I found a few participating salons and decided on Great Clips. Wednesday morning we were getting ready when on a hunch I decided to call my salon, Express, and ask if they participated. It turns out they didn't, but they did participate in a local organization called Children with Hairloss, that only required 6 inches and the hair stayed here in Michigan. Gabrielle was given her options and she chose the local organization. When arriving at Express we originally decided to do 10 inches, in case she changed her mind. But once all the hair was sectioned off I realized that if she did get 10 inches cut off, her hair would be by her ears! So only 7 inches was cut off, Gabrielle got her first haircut, I didn't have an anxiety attack or cry, and Gabrielle walked away knowing she did a wonderful thing for someone else in need. All in all, a good experience!

Jack's Baptism

On July 5, 2009 Jack was finally baptized! We held our breath up to the morning of because last time we had actually planned it all out Jack ended up in the ER with breathing problems. Pastor Ron didn't even put it in the morning bulletin in case Jack ran into trouble again! But finally, after many months of official and unofficial planning, Jack is baptized! He did awesome. Everyone thought he was so good during the service and how well behaved he was. I just laugh because he was so incredibly antsy and didn't want to sit still. And if he could have made sound, he would have been! I said the only reason you all thought he was such a good baby was because he has a trache and he can't make a lot of noise! Cracks me up!

Fourth of July Parade

This past July 4 was pretty exciting. Jack got to go to his first parade and the girls got to ride their horses in their first parade. I was uncertain how Jack would do being outside that long but being outside was the least of my concerns. Jack was fine in the beginning (before the parade started) but once the firetrucks and semitrucks started honking and blowing their horns it was over for Jack. I had turned his pulseox off, but it would have been interesting to know what his heartrate was when the big trucks went by. I actually had to plug his one ear with my finger and the other ear with my mouth to try to keep out some of the noise. By the end of the parade though he seemed to react less to the big trucks which was good.

The girls did an awesome. Sam led Gabrielle on Barbie and he said Gabrielle controlled her the whole time and Sam never once had to grab the lead. Yeah Gabrielle! She was so excited leading up to the parade. Every day she would ask me a millions times how many days until the parade. She dressed Barbie in pink and Gabrielle wore her pink cowboy hat, boots, and shirt. And if looked really close, Barbie's toes were painted pink too! Not very patriotic, but very cute!

Kendyll did great too. She did her princess wave to everyone in the crowd. She ate up all the attention she was getting. Later in the day when we were in the store she stood in the basket of the cart and continued to wave to everyone like she did in the parade. It was very cute. All in all, it was a long parade, but worth it.

Kendyll's Glasses

It turns out that Kendyll needs glasses (she is far-sighted). We noticed that when she focused on something her left eye would float towards her nose. Her first eye doctor appointment was filled with anxiety and tears! She was terrified that all the equipment and the instruments were going to hurt her. There were some pretty rough spots but she made it through like a champ! Her new glasses arrived today and she was pretty excited. They are pink, wire-rimmed, with little hearts on the side, and pictures of glass-slippers on the tips. It also came with the most adorable little pink Princess purse(glasses holder). Which fits Kendyll so perfectly. She actually showed up to pick up her glasses with a pink sequined purse. She keeps trying to put things into her glass holder though. I've found chicken nuggets and nail polish so far. It will be fun to see what else she tries to put in with her glasses! She is not enjoying wearing them either. I often times find them on top of her head and she's always asking if she take her "sunglasses" off. Hopefully this is just a bump in the road and we caught it early enough that the she will only have to wear the glasses for a short period of time.

Jack's Progress

Jack has been doing so awesome lately. From being able to roll onto his stomach (still won't lift his head) to actually eating more orally to needing less oxygen. Just to get a sense of where Jack was and where he is now, here are some before and after pics. The first picture is from one of the first times he was in his walker. He was 5 1/2 months, totally should have been able to be in his walker...considering my girls were crawling at 6 and 7 months...but he was so tiny he was totally lost in the walker and I had to help support his head. And look how worried he was! That was when any type of sitting could pretty much guarantee he was going to stop breathing. So the walker was definitely not one of his favorite things to do. The second picture is this past week. See the huge difference just in the pictures! Now, the last is a video of him this week just hanging out and doing awesome in his walker. He can sit back and also pull himself back to an upright sitting position as well. The walker is now one of his favorite toys to sit in and play with.

And if you notice the last 45 seconds he's just staring, that would be his obsession with Blue's Clue's. He loves his Blue!!

Feeding Clinic

Today Jack went to his second appointment for feeding clinic. The therapist "Rose" laughs at how manipulative he is in getting his way. Any little fussing or whining and he's automatically taken out of the situation he's in and made happy. I call him "Master of the Universe" because he is. He's never allowed to be unhappy..for any real length of time that is. I think he started to get fussy about 2 minutes after being placed in the highchair. We tried with no success to keep him content without picking him up but that lasted maybe 2 more minutes. She asked me what I did in situations like that and I said he's just picked up. Immediately he stopped crying and started smiling at the therapist. For the rest of the session he was on my lap. That's how the first session went as well, on my lap. He doesn't enjoy sitting up for any length of time...unless it's in the exersaucer, johnny jump up, or walker...and he throws himself back when he's tired of sitting up. If you don't allow him to recline he starts throwing a fit. So this is how therapy went: Sitting up, whining, reclining, calm....sitting up, whining, reclining, calm....you get the picture! Right now the therapist is basically working on "kissing" objects and face massage. He smiles too much and his muscles don't relax enough. Our future goal is for him to have more relaxed muscles so he can get a better grib on the bottle and to start making more shapes with his mouth. Right now his basic shape is smiles! Which I love, but I guess it's not good for when you're trying to make progress eating! Makes sense. Our homework last week was to have "messy play" Which has been recommended before by his PT but never went well. I was amazingly shocked and surprised over this past week. Usually he would get the food on his hands and throw a fit. He actually allowed the food on his hands and would suck the food off his toys that were submerged in the food! His first few mornings of messy played lasted for over 10 minutes! That's huge progress for him. He's also getting more interested in the food we're eating. He went insane over the sauce on my mac and cheese last week. I couldn't keep the spoon soaked enough for him! So all in all, I think we're finally starting to make progress with his oral aversion! Yeah Jack!!

Welcome!

It seemed inevitable that I would eventually start a family blog. During Jack's many hospitalizations I've considered Spectrum CarePages, but never felt completely comfortable doing so. So here I am, writing my very first blog. My hope is to keep everyone updated on the ins and outs of our family. My plan is to update as often as possible, but with my life and our family routine, that may be far and inbetween. So thank you for checking us out and please check back frequently as I get the hang of this thing!