Wednesday, December 16, 2009

December...

We have celebrated one Christmas already, with the Latshaw's. The first weekend in December Aunt Becky came in from Florida (we missed Marcos, wish he could have made it.) and Cousin Julianna came in from Wichita. We had a great time with all our family. We also had an unannounced visitor, Santa Claus came to our house on Sunday, 12-6. We are celebrating another Christmas this weekend, with the Bowman's. Aunt Kari is coming in from South Carolina. And the Bowman crew from Carroll. We are so very lucky to have a family that will come to us, as it is not easy for us to travel.

We have had a lot happen, to make a long story short, we are going in for a sleep study tonight at Children's Mercy South. This will give the ENT much information about his obstructive sleep apnea and how many time he de-sats (oxygen decreases) during the night. We already have a tonsil and adenoid ectomy surgery on January 14 at Children's Mercy Downtown. His tonsils are very swollen, hindering his breathing. With this surgery our goals are to help Carson breath better (obviously) and to decrease our need for oxygen while he is sleeping.

We will keep you updated as we learn more....

Love The Bowman's, Happy Holidays to all!!!
We made Ginger Bread Houses this year. Carson was very proud of him self (I was also proud!)

A Santa Claus blessing.
Just settled in for a long winters nap....

Monday, November 30, 2009

Happy Thanksgiving....

We had a great Thanksgiving. Here are my three things I am thankful for....

For my Husband, Jeff, and for his love to me. I could not do what I do with out it.
For my family, friends and complete strangers who give us there love, affection, thoughts and prayers each and every day.
And most of all for my Son, Carson, he has taught us so much and for each and every day we get to love and cherish him here on Earth.

We spent Thursday at Aunt Jen's house, of course stuffing our bellies with amazing food. Friday afternoon the Bowman's came in from Iowa (G-ma and G-pa Bowman, Rob, Arica, Bryce, Brynn, Bailey). We had another Thanksgiving feast on Saturday. It was great to see and spend time with everyone.

On Friday, we took Carson to the Dr. he has tonsillitis again, and an ear infection. So we are on antibiotics again. We are scheduled to see an ENT on Dec 9 to talk about tonsillectomy. This would be more for his Obstructive Sleep Apnea (Carson will have episodes where he is trying to breathe, but his airways are closed. His air ways usually open up pretty quickly.). This will be a big decision for us....we are definitely going to do all our research first and see if we absolutely need this surgery.

We are very much looking forward to this weekend as well. Aunt Becky is flying in from Florida (we hope Uncle Marcos can also make it). We will celebrate Christmas with all the Latshaw's!!

Sunday, November 22, 2009

A long awaited update...

The last 2 months have been very challenging as Carson has been sick for the majority of it. Soon after my last post Carson started having crying spells. He is a kid who never cries, so when he does, there is something terribly wrong. We went through the list of what could be hurting, making him cry: pain with seizures, teeth pain, stomach pain, H1N1, C-dif (bacterial intestinal infection).... Mortin and Tylenol would not even touch the pain he was feeling, we had to give him Tylenol with Codine and Roxicet to give him a few hours of relief. We ended up at Children's Mercy ER on Halloween morning and was diagnosed with Tonsillitis, we were sent home with nothing they could do. A week later, Carson's pediatrician gave us some antibiotics, helped the throat, but gave him terrible gas, the kind with double you over cramps. We stuck it out and finished the antibiotics while also giving him extra strength Gaviscon for the gas. Just this last Wednesday Carson started getting back to his old self!!! (During the last 2 months, we had to stop playing and pretty much moving him because his pain was so high, or he just felt like crud and did not want to move). Carson has been playing with his bubbles and other toys again. What a relief to have our 'old' Carson back. Our stress level was getting pretty high!

Friday (11-20) we had our annual check up with the neurologist. Dr. Graf and his nurse Courtney was very pleased to see how well Carson has been growing and how he looks. However, they of course still conflicted, as we can not get all of Carson's seizures to go away. We have decided not to change anything at this time. We do still have plenty of growing room with the Neurontin.
Today he has been smiling a lot for us, we caught one with the camera so far. So great to have Carson back and feeling well!!

We love you all and are thankful for every one of you!!!


Monday, October 26, 2009

Funny Carson

Our routine in the morning is to get up at 5:45 am and start his meds and bottle and change his diaper, on the weekends we then go back to sleep.  Saturday morning Carson did not even stir during this routine, except when I went to change his diaper.  With out even a blink of the eye or a movement, Carson let out this loud sound, EEEEEEEEEEEEEEEEE.  You know that sound the sound your kid or spouse gives you when they are sleeping and do not want to be bothered.  Carson's sound clearly said, "Leave me the h*ll alone!"  I could do nothing but laugh.  :)

Thursday, October 22, 2009

Tent fun





It has been rainy today. We got out the tents to play with, here are some pics of Carson and the kids playing together. Carson is doing better each day, today was a great day, lots of playing and has been wide awake and enjoying the fun.

We talked to the Neurologist today about Carson's increased seizures. He has been having at least 6, what we call Grande Mal seizures, a day. During these seizures, Carson is shaking, holding his breath and turning blue, the duration on each individual seizure is an average of 20 seconds. These seizures wipe him out. Carson's neurologist would like to add a drug called Neurontin, this will help with seizures, nerve pain and his stiffness. Please pray that this is a good drug for Carson and that it works well. We will be starting it tonight.

Monday, October 19, 2009

New Schedule

I have updated the schedule on the side.  

We have decreased his formula and increased his water, he was getting too big too fast.  We have also increased his breathing and shaker vest treatments.

I am always available for questions if you have any....sarahn.bowman@yahoo.com

Sunday, October 18, 2009

Still recovering...

We have been taking it as easy as we can the last few weeks.  Carson is getting better but very slowly.  We are still using oxygen every night, it helps us get better sleep, because Carson's O2 saturation does drop down when he sleeps.  We are still on breathing and shaker vest treatments 4 times a day.  Carson had his last doses of antibiotics today...thank goodness because the diarrhea is getting pretty bad (we have been doing a lot of laundry).  Carson is still very cruddy at times and needs suction a lot.  He has been coughing up white mucus, we had a thought that it could be his formula, that is fundoplycation was failing and he was refluxing and aspirating his formula.  With doctors approval we did an experiment, we colored his formula for 24 hours a bright blue.  So if he were refluxing and aspirating, his mucus would have been blue.  Great news!!! his mucus stayed white, his fundo is still in tact and no reflux!

We had family pictures taken yesterday at the Overland Park Arboretum.  It was a bit chilly but all in all a beautiful day.  The pictures will be back in a few weeks and will post them so you can see just how big our little boy is getting.

Thank you for all the thoughts and prayers, please keep them coming, winter is only beginning.  We are of course hoping for a very healthy winter and to stay out of the hospitals and doctors offices until spring (at the earliest).

Love the Bowman's

Saturday, October 10, 2009

A touching story.

Past-
If you can remember when Carson was first diagnosed, we had an amazing team who help diagnose Carson.  Now also remember, Children's Mercy is a teaching hospital, so the team consisted of students, interns, attendings and Dr's.  Due to our emotional situation, diagnosis and new life ahead of us, we made some special bonds with the team.  One in particular, Jessica a student (at that time), wrote a very nice thank you to us for letting her be part of our story.  So we were sent home, said good bye to the team and only had a few thoughts of those who helped us and how special they were.  (We also had just a few other things on our minds)

Present-
On Saturday as we were in transit from Olathe Med to Children's Mercy DT, a room and bed was getting ready for Carson.  As the hospital was assigning Carson to a team, a Dr heard that a boy with Menkes was coming in.  That Dr immediately asked if it was Carson, it was!!  Carson was going to be put on a different team, but this Dr said oh no, that boy is mine, I want him on my team.  As I am sure you know where I am going with this....the Dr's name was Jessica.  That is amazing in itself but the story goes on.  
(We knew nothing of the above story)
As Carson, Jeff, Nana and I were walking into Carson's room, a Dr walked in behind us, nothing unusual, but upon second glance we recognized her, Jessica.  With eyes turning red and starting to tear, we shared a hug and a rush of emotions from the past.  As we caught up a little she informed us that she had just asked about Carson the day before...it is amazing how those Drs know.  
Jessica also told us that when we had first met her as a student she was in line to become a surgeon (no where near pediatrics).  It was after she met and helped to diagnose Carson that her life changed completely, she knew then her calling was pediatrics.  She finished schooling for peds and was asked to write an entrance paper when applying for a job at Children's Mercy DT.  Jessica's paper what about Carson and how he changed her life.
As a mom with a special needs son, and a rare disease, I hope that we do change peoples lives.  I know that we do, but to hear about it and to see it, is a whole new level of emotions.   It was great to see Jessica, how successful she is and to work with her again, we knew from the beginning she was an amazing woman.  We will not lose contact this time....

Tuesday, October 6, 2009

At home

We got home today at about 12, noon.  Carson has not stopped talking since, it is great to hear him just a blabbering away...I can only imagine what he is telling us.

Will give more of an update later. We have got an inspiring and touching story for you!!!!

Monday, October 5, 2009

home ward bound

The doctors agree that Carson needs to go home, all children recover better at home, especially since we have everything at home we need. Carson is going to finish out today and tonight in the hospital and as long as he does not require any more oxygen, they will send us home tomorrow morning. He is still needing 3/4 of a liter of oxygen, everyone is comfortable with Carson going home on oxygen. Will keep you posted.

Just resting

We are still downtown at Mercy. Carson is improving, little by little. His fever is down. He is still on oxygen and is in need of the strong IV antibiotics for another day to a day and half. I am going to do my best to talk them into sending us home, even if he is on oxygen (we have it at home). Carson is no longer coughing up blood, and is breathing much easier. He asthma is under control. It is just a waiting game at this point....

Sunday, October 4, 2009

Home from vacation straight to hospital

Well we made it home from vacation, Saturday afternoon. When we got home, Carson started coughing up a little bit of blood. That was all I needed to take him to the hospital again. We went to Olathe Medical ER to start (easier to be transferred to Children's Mercy than walk in).

We checked into Children's Mercy downtown Saturday evening. They are saying right now Carson has 'Complicated Pneumonia' they want to keep him for a few days to do some strong IV antibiotics and get his asthma and breathing under control.

Sunday morning, Carson is still coughing up some blood, and is having a hard time breathing. Carson slept very well last night and most of the morning. He has been on a little bit of oxygen all night and today. We are just hanging tight, trying to relax and getting Carson better so we can take him home.

Will keep you updated as much as possible.

Friday, October 2, 2009

Sick update

The tests results from Thursday are in (some of them) H1N1 came back negative. Blood cultures were clear also. We are still waiting on the stool test to come back. So we thought we were all good to go on vacation.

All was well until Wednesday, Carson woke up with a slight fever, 101. We nursed it and waited for 24 hours hoping it would go away (we talked with the pediatrician also). Thursday he woke up worse, very close to 105, hard time breathing. After talking to our doctor in KC again, we decided to take him to the local ER. There he had more blood tests, his white blood count was up again, to 14. He also had another chest x-ray, came back negative. What the ER Dr, pediatrician and us decided was that the Amoxacillin was just not working. Carson was given another Rocephine shot. We also started him on Prednisone, he has been having asthma attacks. On Friday we went back to the ER for another Rocephine shot, we also got Tylenol with codeine for him (he has been just miserable). He of course is wiped now and we will get home tomorrow just fine. We will see how he is tomorrow and go from there, if we need to check in with the pediatrician or go to Children's mercy or are fine and will stay home.

Please keep up all the prayers, we can use as many as possible at this point. It is too early in the winter season to be having these health issues.

Saturday, September 26, 2009

Thursday and Friday at the Doctors...

Thursday morning (9-24) Carson woke up with no (I mean absolutely no) color in his face, not even his lips, he was chalky white...very scary. The first thing we checked was his O2 levels, they were fine, he was at about 93%. We took his temp. 102 axillary, pretty high. He had also been having diarrhea the last few days. (We did not think much of it as we had been giving him pear juice.) We called his pediatrician, she of course wanted to see him. We spent 2.5 hours there, checking blood and flu. His white blood count was sky high, normal is between 5-7 Carson's was 31!! He has a major infection of some kind in his body. The pediatrician wanted to admit him to the hospital right away. We of course did not want to do this, so we opted for some tests at Children's Mercy. They tested him for N1H1, did a stool test, blood cultures and chest x-ray. The chest x-ray came back negative for pneumonia. We do not have the results from other tests. They gave him a Rocephin shot at the dr, and put him on Tamiflu and Amoxicilin. Carson's white blood count was down to 10 on Friday. Thank the Lord, we did not have to be admitted and he recovered as fast as it came on. Though we are not sure what the infection was. I will post what the other test results were when we get them.

Friday, September 18, 2009

update

We have been busy...here are some updates.

Last Saturday, Nana, Jen, Carson and I made the trip to Wichita to cheer Julianna on in her volleyball games.  Here are some pics, we had a great time, Carson was very vocal and loved cheering his cousin on.  He did have ear plugs in because as you know, the gym gets very loud.


The nutritionist came to check on Carson and how he was doing with the increased food.  He is growing and a lot...he know weighs 31 pounds 8 ounces and is 34 inches tall.  He is doing great!!!  We also got a new chair for Carson.  It is called a Versa Form, it starts as a square bean bag and you form it how you want and suck out the air so the beans then do not move.


We took Carson to the dentist today to see if they could help us with his teething.  Since Carson does not use his teeth he is having a very difficult time cutting teeth.  He has been trying to cut his K-9 teeth for over 6 months know.  They are swollen to larger than peas and black and blue.  So painful, the dentist said that all looks normal, he said what we are doing is all we can.  We are going to use the frozen teething rings more, this will help break the teeth sooner.

Monday, September 7, 2009

Labor Day Outing...

We had no kids to watch for the Labor Day.  So we decided to get a group together and go to the  Overland Park Arboretum and Botanical Gardens.  There were 4 total families and Carson's nurse, Jen, in our party.  We had a great time...when we first arrived the fog was just beginning to clear and things were still covered in dew.  So beautiful!!  Carson did awesome and we even caught him opening his eyes behind his glasses.  He felt many new textures, heard new noises, and smelled new smells.  He had so much new stimuli that you would think he would have had extra seizures, in fact it was just opposite...he did not have one seizure while we were in the Arboretum!!!  Maybe on the days we are at home and he has many seizures, he is just bored?!?  In the pictures below see the beautiful wild life; frog, flowers, web.  Also see if you can pick Carson out of the jungle.  We had an amazing morning!!!

Love- The Bowman's







Friday, September 4, 2009

Fun Times...

We are having fun today!!!  Carson woke up in the best  mood, just talking and looking around and his Bowman smirk smiles!!


Thursday, September 3, 2009

Monday, August 31, 2009

Feed me....

Carson has been telling us to feed him more!!!  OK, so it was actually the pediatrician and nutritionist that said Carson needed more calories.  Carson used to get 25 total ounces all day and now he gets 32 total ounces.  He is taking the change well, he is not having any tummy aches.  He actually seems to be more aware...like the nutritionist said, "calories are energy."  (Carson's updated schedule is on the side of the page.)

Carson went on a run with me last night, in his Jeep stroller.  I put his MP3 player in with him and it seemed that he was singing with it, most of the ride.  I also asked him how he was doing and he answered in his own way telling me he was having fun.  Who would have imagined that on August 30 at 5:30 in the evening Carson would need long pants, a sweatshirt and a blanket to go on a run.  It was such a beautiful evening.

His seizures have been ok.  We are still having 20+ a day.  He has started this new thing that we are calling episodes right now, we are not sure what they are, if seizure or if he is trying to tell us something.  He will go into a whole body extension then holler at us, it is not a cry or scream, just a holler like he really wants us to know something.  There is not a jerk or shake that proceeds or follows this, that would be a sure sign to us that he episodes were seizures.  Carson's neuro (Dr. Graff) has increased his Clonazepam temporarily to see it it helps his episodes.  So far it has not helped.

Carson is sleeping through the night, and likes to sleep in on the weekends.  We have been having to wake him up at 8:30am to get his shaker vest and breathing treatment going before the 9:00 bottle.

Thursday, August 13, 2009