Decisions

It is defiantly Cold season.. not only outside, but at our house. Today it is much cooler outside. I am sure the nice weather will be back soon. Zak came down with his first cold of the school year. I am sure it is from getting his flu shot on Friday. It seems like every year this happens. He was so nice to share with Mommy too. Poor guy when he is sick he gets so much gas and just gags from the flem with his Nissan (stomach surgery he had for GERD). He is quite the trooper though. We are hopping Callie does not get it.

Zak is up to 28 pounds again. He likes to eat now that he is fully recovered from his tonsil surgery. Keep it up big boy! What a difference that has made is his sleeping too. Callie is still around 7lb11oz. The poor girl is getting plenty of calories but just burns so much trying to eat. She is also getting more playful since she has been feeling good.

We now have a big decision to make about Callie’s weight. We have been putting off a feeding tube, playing the waiting game. We are finally to that point. Several doctors have asked If we have considered it. Of course we have, we just are not ready. We have had some very long talks with our GI doctor. He has even called us at home on several occasions. He is one of the most amazing people I have ever met. He truly takes everything into consideration. Last week Chris and I finally agreed to move forward with a feeding tube. Callie had a rough week with an ear infection, antibiotics which lead to lots of stools and reflux. Now we need to determine if the reflux was more because the antibiotics or just because she is finally eating more.. or just because that is her and that is the way it is. Unfortunately no one knows the answer. Where is the magic ball when we really need one. So now we have begun the discussion if she needs the Nissin.. after even more discussions (yes all in one week) we said fine, go ahead. Our GI doctor said we should meet with the surgeon and himself again before we move forward. I just wish this was a simple decision like it was for Zak. This time it is not a cut and dry decision. I think this is one of the hardest choices we have had to make regarding our kids medical care. Thankfully our doctor is amazing and we trust his judgment. It is in God’s hands to guide us and I know it will work out in the end.

On a good note.. Chris and his Dad went out on Duck opener this weekend. They each got a Duck and were home in time to enjoy the afternoon. I love that they can go out and bond and just get away for a bit. Then Chris went up north on Sunday with some Friends and they got 2 more after getting stuck in the mud. There is always a good story that comes out of every season. So needless to say, thanks to Kathy cooking we had duck on Sunday. I still cannot stand the smell of it cooking in the house. I am sure there will be plenty more weekends of hunting.. tis the season. Also, Sat night we got out with the whole Family. Chris’s cousin and wife were in town from CA for the weekend. It was nice to see everyone and get out of the house for a while. Both kids did good, but were defiantly ready to come home.

So much for a quiet week

It was supposed to be a nice quiet week. Back to "normal" only 2 scheduled appointments for the whole family - 2 therapy sessions. A full week of work. I knew it was too good to be true!

Callie started to have her twitching episode again on Wednesday. By 6pm she was screaming and not eating. She took one 15 min nap by 8:30p. We took the bandages off her head from the shunt surgery and her soft spot looked indented. We had no clue if this was normal or not since we were so used to this raised lump. Our nurse assured us it was ok, but we should just call neuro in the morning. The screaming continued so we called the PICU doctor about 10:30p who suggested we bring her to Marshfield. We really did not want to be there knowing what type of care we would get... no help at all due to lack of staffing with all the cuts. It sure makes for some long days and nights when you average 2-4 hours of sleep a night, in 15-30min increments. Not knowing if this was shunt related or one of her episodes it was best to be checked out though. She had a CT scan that confirmed the shut is working properly and everything looked great. She was getting dehydrated from not eating with all the screaming so she was admitted. They adjusted the shunt on Thursday and monitored her. These episodes go for 36 hours and then we are fine. Still no clue what they can be. We kept telling everyone by Friday morning at 6am she will be fine. Really I think they thought we were nuts. Friday morning she started eating again and perking up.. just as we thought. Sometimes I wonder why they just don't listen to parents and accept it is practice and they don't know everything. She had a great day of eating. Her last good bottle was 10pm Friday. We have been fighting with her since to get her to eat. Ahh.. Sometimes she goes in these little spurts, but not an all day thing. Finally at 8:30pm today, of course when there is no walk in. We went to the ER. Sure it was an ear infection. Really - the ER for an ear infection, but what do you do at this time of day when you really don't want her be in pain all night long and have to wait until morning to be seen? So off to the hospital. It was an awesome visit. We went to St. Clare's. No reason for a 45 minute drive to Marshfield. We were in and out quickly. Sure enough it was an ear infection. Her second already. They even filled the prescription there for us so we did not have to figure that out at this time of night. We have had some great experience with that ER. They also took a bunch of wax out of her ear and sure enough, she started to eat again. It was so nice for her not to fight with us, when all she wanted was a full tummy. What a great experience! Thank you.

Zak and I went to Gabe's 4th birthday party today. It was so nice just to get out and do something fun rather than the regular routine. It was so cute, when we got there I told him happy birthday and that Zak brought him a birthday present. He said I hope it is transformers..thankfully it was. I told him I did not know he had to ask Zak. He said Zak does not even talk yet, he is not big like me. I just had to laugh it was so funny. Little does he know Zak is older, yet he is smaller. That is all kids really know age by when they are so young. Kids do say the darnedest things :) I told Gabe's Mom we are coming over more just to eat. Zak ate so well. A half of container yogurt, a whole hot dog, cheese, Cake and Ice Cream.. and Cheetos! A new food for him. He even bit them, I was shocked. I guess we will have to go shopping. Then I set him in the grass to play. Something we cannot really do at home since we have so many bugs being by the woods. He rolled right to his tummy, and stayed there playing in the grass for about 2 min. He never stays on his tummy. Then he sat and pulled the grass. He sure liked it. What a great day he had!

Then to top off the day, we even went to dinner with some good friends of ours. They are busy with 2 little ones as well so it is hard to get sitters and get out. An adult evening just to catch up on life. Something we have not done in a while. It was much needed. So even after a crazy week we had a good day.

Bus Ride!!

Zak rode the bus for the first time this school year! He missed the first week of school since he had pneumonia. Last week Grandma took him to school and picked him up. Now he is taking the bus to school. He is the only student on the bus on the way to school. The babysitter and Grandma pick him up. He would have a 45 min ride home..not an option for him. Every time the bus stops he cries. It would have made for a long ride. I have been getting good reports from school, he seems to like it. He has 5 kids in his class right now. He has an Teacher, Aid and many therapists in and out. It is great to have a routine for him. Then he comes home and is with the baby sitter until we get home from work. She has been working on reading books, art project, Napping in his crib (HUGE step), and therapy.

Zak getting on the bus with the bus driver and school aid helping.

I thought this picture was adorable. Zak is sneaking up on Callie. He still thinks she is an animated doll still. We have been trying to work with him lots so he understands she is fragile. We even bought him a toy doll to see if that would help. We keep telling him someday she will be big and then it will be pay backs. Daddy loves to play the so big game with him. He will say "How big is Zak? So big. How big is Callie? So Small." It always puts a smile on my face. It is so cute.

E-mail

I got this e-mail today and thought it was neat and wanted to share:
Life is too short to wake up with regrets. So love the people who treat you right. Forget about one's who don't. Believe everything happens for a reason. If you get a second chance, grab it with both hands. If it changes your life, let it. Nobody said life would be easy, they just promised it would be worth it. Friends are like balloons; once you let them go, you can't get them back. So tie the good ones to you heart so you never lose them!
Thank you go all of our wonderfully friends and family and all of the support you give us. We are fortunate for each one of you.

Callie is doing better today. She is still a bit tired and not eating the best. She goes in spurts. Hopefully this weekend her feeding will pick up a bit.
Zak also had a good day. His teacher said he is going out side for play time. He even left his hat on! Hopefully the sunglasses will be next. He made hand puppets with the babysitter. She does such an amazing job with Zak.

A little more stress.. we had an aid that was going to help Zak in the mornings. She She quit after 3 days saying Zak is too much work. We are in the search once again.

We are Home

Callie is home from the hospital. We are ready for life to get back to "normal". What ever that means. Hopefully things will slow down and the kids can get healthy.

We had a terrible night in the hospital. I hope we don't ever have to go back any time soon. Callie gets night nursing when we are at home. The team knows her so well that we are finally getting a little sleep. She still gets suctioned from her nose surgery and she is on a strict feeding plan so it can make for some long nights at times. Try adding the pain from surgery and wow, it can make for a long night. By 3am I still had not slept, after asking for help from nursing I was told they could check in, but there was not anyone to stand by her bed and keep her calm or just rock her. I was ready to cry. This same thing happened to Chris one month prior- I now understood the feeling of helplessness he went through. I just thought to my self is there anyway we can just break out of this place and get home where we have help. I was able to catch little cat naps before she would scream again from the gas pains. Partially from surgery, the other part from crying since she was in pain from the surgery. Finally 7am and Neurosurg made the rounds and said from his stand point we are good to go. The surgery is working as her soft spot is going down. It is up to the peds doctors on the floor. I started packing our bags immediately.. we were going home. I did not care what anyone else had to say. Thankfully they were on board and discharge could start. She has been doing well throughout the day at home and finally starting to eat better

Grandma came down early in the morning and brought Zak with. We had his foot x-rayed since we heard a loud pop on Sunday and he still will not bare-weight. Thank god it is not broken. Hopefully soon he will be feeling better.
Yesterday was his first day of school since he missed the first week with his tonsils being removed. We received great report. I know he always love going there to play with his friends, teachers and therapists. He has another great team this year so we are excited to watch his progress.

Surgery is a Success!

Callie had her surgery today. We were up at 4am to be in Marshfield for a 6:15 check in. The neurosurgeon put in a shunt since her first surgery did not work. The original surgery was an attempt to make the natural drain a little larger so the fluid would drain on its own. After our MRI on Friday it was determined the fluid was the same as the last MRI (prior to her previous surgery.) Putting in the shunt was our only option at this point. She has internal tubing that runs just under her skin from her brain to her abdomen. It just feels like a vain under her skin. They used a shunt that has a valve that can be set externally. Any time she would have an MRI it would just need to be reset. We pray this will work. We will always have to watch for infection or blockage of the shunt since it is hardware, however it does not sound like it is extremely common.

One of our Pastors came to visit us this morning while we were waiting for the surgery to be finished. It provided a nice distraction from our typical wait. It was very calming to have him here and say a prayer for Callie and our family. We cannot say enough great things about our Pastors and congregation for the support and prayers for our family.

Once surgery was completed we went to recovery to be with Callie. She was doing well and was admitted to the main Pediatrics floor. She has been sleeping most of the day with a few fussy periods. When she cries the surgical site on the top of her head bleeds more. They are watching it closely. She really has not ate all day. We are hoping that will increase by morning and we can go home tomorrow.

Also, Zak will be getting an x-ray on his ankle tomorrow. We were doing his normal routine stretching and we heard a pop in his ankle. He does not want to stretch it, stand on it or even have it touched. The doctors thought it would be best to have an x-ray just to rule out things. Hopefully it is just a matter of time and it will feel better.

Surgeries Scheduled

Both kids will be having surgeries.. again!

Zak went to the eye doctor on Tuesday. He is going to repair the eye that feel last week. He also decided to repair the other one even though it is ok. Who knows if it will fall the day after surgery or 3 years. With our luck I am sure it would be sooner rather than latter. This way they will both be done at the same time and look the same too. Surgery is scheduled for October 23rd.
We also saw his pediatrician for his pneumonia. She changed his antibiotic since he still had a fever. We are already seeing a difference in him. Also, he gained a half pound since surgery. Way to go buddy. We also followed up with ENT and everything is looking good. Hopefully he will start to eat this weekend.

As for Callie. She had a MRI today and it appears the fluid in her brain is the same as it was just before her last surgery. Therefore the surgery did not work which we knew could happen. She will need to have a shunt place. Surgery will be on Tuesday. She will for sure need to stay one night. Hopefully that is all.
Callie also had a great week in the weight gain. She gained 5oz in 6 days! She is now up to 7lb 8oz. We are finally outgrowing the newborn clothes.

We also got our Nanny back part time!! Our peds doctor was not very excited to know Zak was back in day care. With him just having surgery, one on the way, pneumonia and Callie she did not think that was best. That same day our Nanny called and said she can work part time. We will miss all of Zak's daycare teachers and we know he will miss all of his friends, but we cannot wait to have our nanny back for some 1-1 time while we are at work.

Tonight is movie night in the house. We can all finally sit down and watch a movie. No nurse tonight so hopefully the kids will sleep!