What a crazy summer!  Cooper finally came home at the end of August.  He is doing really well and he is going to the bathroom like a champ:)  So glad to have our happy boy back, it has been a miserable several months for him.  He has had some serious raw butt from the frequency of going poop.   After much research we have come up with using stoma powder on the open sores and covering them with Ilex cream.  It is working great, Ilex cream is amazing!  Who knew I would be such an expert on these things.  Cooper is weighing in at a whopping 16 1/2 pounds.  For Cooper this makes him practically an amazon.  His reflux has been in check, minimal spitting up, just fussy in the mornings after being fed all night long.  He has been chatting to us in his "own" words.  I love his little sounds!  He does say, mama.  I don't think he knows what it means but I'm still glad he says it.  Darrel is working on DaDa but I think it might be awhile.  I am a little bummed we didn't get to do much this summer, but very happy all the kids are healthy.  Thanks again for all of the prayers.
Kalani
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Cooper was doing well for a few days after we came home from the hospital but around 4 days of being at home his stomach started to get really bloated.  His BM's started to slow down so after a call to the dr's we tried an enema, more miralax and prune juice.  This did help his bowels get moving but his stomach just got fuller and harder.  On Wednesday we went in for our post-op apt., after a brief exam Cooper was sent over for x-rays.  After reviewing the results we were told there was a partial bowel obstruction and he needed to be admitted.  The plan was to drain his stomach and let his bowels rest by no feedings just IV fluids until Monday.  On Monday they were going to repeat the x-rays, but they soon discovered he still had contrast in his system from the previous x-ray.  Nothing with Cooper is ever easy:)  The surgeon decided with so much contrast still being hung up in his bowels that he would need to go in and fix the colon.  In the last surgery the Dr. used staples to connect the colon, they now think that the staples may be taking up to much room in Cooper's colon.  This time around he plans on using stitches.  The surgery is scheduled for this Thursday so we ask for prayers for Cooper and our family.  The girls are starting to show the strain of being shuffled around.  I really feel bad for all of the kids.  I just pray this surgery is successful and Cooper comes home without any pain. 

Kalani

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7


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Cooper had the second part of his take down surgery on July 13th.  The surgery was short about 2 hours and everything went well.  It was a welcome sight to see his tummy without the colostomy, but Cooper was in a lot of pain.  The colon was put back together with titanium staples and he has an incision across one side of his stomach.  After the last surgery where the anus was made Cooper didn't seem like he was in a lot of pain so I was surprised when he was in so much pain after this surgery.  After several days they started his feeds which of course were not successful.  They did listen to me this time when I said go slowly.  The Dr. said 2 to 4 days for recovery but Cooper has his own schedule.  Day 6 they started the Miralax, Day 8 he started having some gas.  We were so happy that something was going through his colon.  There is always a chance something will go wrong such as a leak or obstruction.  Day 10 still no BM, they ordered an x-ray and everything looked good no obstructions so we were very relieved.  Day 11 Finally a BM smear!  Darrel kept saying he wished he could frame the diaper:)  We were happy with the smear but still it was not significant.  Day 12 the surgeon came in and said it was official Cooper had gone the longest before pooping of any patient he ever had.  Well, our family is always beating the odds so it didn't surprise me:)  When the Dr. checked Coopers diaper lo and behold a real messy diaper.  We were told we could go home asap.  We were very happy to have Coop home and not have to juggle the girls.

We have been home for 4 days now and Cooper is going poop, all of the time.  It is great he is going but his poor butt has severe diaper rash or butt burn.  We have started using Magic Butt Cream so I hope some relief is in sight.  Cooper is still very uncomfortable from his butt, the incision and he has been spitting up some.  He doesn't seem to like the whole pooping thing and the poor guy probably wonders why we keep checking his butt.  Cooper is a tough little boy and he'll get through this.  It is just hard to watch him be so uncomfortable, please keep him in your prayers.

We really appreciate all the support and prayers,
Kalani
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Camp Sunshine 07/11/2011
 
After delays, an extra flight and lost luggage we made it to Camp Sunshine at 12:30 a.m. The kids were real troopers. Although Tess definitely made us pay for it, of course:) Camp Sunshine was amazing and the volunteers are incredible. Leila had the time of her life doing games, swimming, crafts, waterfront activities, bonfires, a masquerade ball and tons more. Tess & Cooper are loving all of the attention from the volunteers. There are 62 families here and only a few infants. Needless to say Cooper was well loved. When we picked him up for meals I wasn't sure the volunteers were going to give him back to us;) We have attended a lot of seminars and it is enough to make your head spin. We met lots of great FAmilies. This is largest gathering of people w/ Fanconi Anemia in history. Wow!

Everyday the kids were off at activities and happy to be there.  I was told more than once to "go away"  It was a good problem to have.  The volunteer to camper ratio was 1:1, I think this was really the best part of the camp for the kids.  Having a college age girl to hang out with.  By the end of camp Leila had some good FA questions and was much more comfortable with all things FA.  The camp was so good for her.

The grown up part of camp was much more intense and emotionally overwhelming.  Some of the seminars we attended were, Bone Marrow Transplants, Hemotological complications, genetics, fundraising to name a few.  Everyday we had a parent group therapy session.  This was one of my favorite parts of camp you really get to the heart of people.  I think my eyes teared up every 5 minutes during group.  These families are so strong and the kids are great.  I definitely feel inspired by everyone. 

There were also lots of fun activities, the masquerade ball, a grown up dinner w. karaoke, a talent show, celebration show and much more.  Darrel and I enjoyed taking walks and going kayaking.  It was a great time spent together as a family too. 

We are definitely hoping to go next year.  Go Camp Sunshine!
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Michael sang this song at camp, it was a beautiful tribute to his daughter who is doing well. 
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Hi everyone!  I'm not sure who is looking forward to summer starting more, me or the kids:)  For me it means no more Mom's taxi service, a break from weekly therapy and long relaxing days.  Cooper is doing good.  When Darrel started his new job in December the new insurance wouldn't cover his prevacid anymore.  He had been doing so well with his reflux but after swtiching medications he started throwing up more and losing weight.  After months of trying different medications the insurance finally approved prevacid.  It has made a huge difference and Cooper is finally gaining weight again, he is 15+lbs now.  I know it doesn't seem like much but we have fought for every ounce.

Cooper had his first surgery for his colostomy take down in May.  The surgery went well, everything has healed up great.  Better than the surgeon expected. Go Cooper!  It did take a long time for him to tolerate feeds afterword and I was nervous about bringing him home.  But the Docs were ready for us to go.  We had no way to give him fluids and he kept throwing up his food, he is so small it only takes a day for him to get dehydrated.  Thank God that Cooper finally turned around before he ended up back in the hospital.  Usually after this surgery you have to dilate the anus to make sure it doesn't stricture, but at the follow up the surgeon said it was healing great and we would not have to dilate at home.  We are all breathing a sigh of relief and I'm sure Cooper will appreciate this.  The second operation will be in July, due to vacations and our busy summer schedule.  This is the big one in the sense that everything has to work afterwords.  Please keep Coop and us in your prayers as this is a major surgery and complications can arise.  Also we anticipate a longer hospital stay and it takes its toll on us and the girls.  We really noticed after the first surgery the girls were having crying jags and a hard time coping. 

We also have fun stuff coming up this summer. We were approved to receive a scholarship for Camp Sunshine.  The scholarship covers our flight to the Camp which is located in Casco Bay, Maine.  We will be at Camp from June 24th to June 29th and then head over to BoothBay Harbor for several days before flying home.  The camp and scholarship is made available through the Fanconi Anemia Research Fund.  We will have the opportunity to meet other families with a child who has Fanconi Anemia and participate in workshops.  They have a great program for kids including swimming, ropes course, rock wall, miniature golf and lots more.  We have been to Maine several times without kids and we are looking forward to showing the kids everything we love about Maine.

Cooper is doing amazing and is such a happy boy and a joy.  God knew what he was doing when he made Cooper so laid back, I don't know if I could this without his happy go lucky personality.  Although we have been seeing some terrible two tantrums:) 

I wish everyone a great summer.
Kalani
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Cooper playing with the dried beans. He likes to feel different textures and he likes to use his feet to feel things. Because he uses his feet to compensate for his hands, it is amazing what he can do with them.
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Cooper playing with switches. If he hits the right switch he get bubbles. He loves the bubbles and will roll all over the living room to find the bubble switch.
Hi!  Cooper is doing pretty good. He is 15lbs and 26.5 inches long.  We all had the stomach bug in December and Cooper also got it.  It was very scary his weight plummeted to 13 1/2 lbs in 1 day.  He ended up in the hospital for 3 days and it took 10 days for a full recovery.  For the rest of us it was a 24 hour bug.  Otherwise we've dealing with the regular things, colds w/ breathing treatments and reflux episodes.  It seems like Cooper's reflux episodes haven't been lasting as long and aren't as severe when they do happen.  We are thankful for this and hope this is a sign of the reflux improving.
Cooper has been going to Endocrinology for hcg injections 2x a week for 6 weeks.  We have 1 more injection left, yeah!  The injections are supposed to hep his testes descend.  I'm not sure this has happened but they have helped with the growth of his penis.  If the injections aren't successful, we will not be doing another round.  We will eventually have them brought down with a surgery, hopefully we will be able to piggy back it with another procedure.  In the next few months we will be discussing hgh injections with our Dr. for Coopers size.  This will be a tough decision.  Kids w/ short stature that have FA don't have as much success with the injections as the general population.  The injections are usually given daily at home for years.  As the hormones accelerate growth, they also can possibly, accelerate tumor and cancer growth.  Coopers size has made it easier to care for him and transport him.  Decisions, Decisions!
We have met with Cooper's surgeon to discuss having his colostomy taken down.  While his surgeon wasn't thrilled with the idea, he thinks Cooper will not be potty trained and it is therefore not the best idea.  In the end he agreed to do the surgery if it was what we wanted.  There are many pro's and con's for the having the colostomy taken down.  We really just want what is best for Cooper.  As you can see it is time for us to hit our knees and take some tough decision to the lord.
Cooper has been recently demoted to 1x a month feeding therapy.  He is such a stubborn boy.  He can chew and swallow, but has decided he would really rather not.  He clenches his teeth, covers his mouth with his hands, and turns and ignores the therapist. It isn't funny, but it is:)  You can bring a horse to water....
In general Cooper is a real goof ball, he loves to play!  He has turned into a copy cat, he waves when you wave, nods when you nod, you get the idea.  He has started pushing himself up on one arm, I'm hoping this progresses to a sitting position.  He has been repeating some sounds we make, he is inconsistent, but I wasn't sure this was something he would ever do.  We are so excited at his progress and it really encourages us to keep pressing ahead.  There is never a dull moment with Cooper!

We are considering going to Camp Shine this summer.  It seems like a really great experience for our family and we would love to meet other FAmilies.  There is a link below, check it out.



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Camp Sunshine.Click on the picture to go to the website.
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Hi everyone!  Cooper has been doing really well and is a happy boy.  He is 23 months old and is weighing in at 14 1/2 lbs and 26 inches long.  We just can't get the weight to stick but we are always working on it. 

Cooper has started seeing several new Dr.'s an endocrinologist and an urologist.  He will be starting Hcg shots 2x a week for 6 weeks.  These are supposed to help with penis growth and his testes that have not descended.  They will re-evaluate in April and if they are not happy with the results they will start testosterone injections.  Let's hope they are successful, testosterone shots make kids cranky for several days.  Just like a teenager with raging hormones:) The urologist will be evaluating the testes, our apt. is in Jan.

He has started feeding therapy again and is doing all right.  He has his good days and bad.  After about 5ml's of thickened apple juice he has reached his limit.  We've a long way to go, but I know "It's a process"  as I'm often told by well meaning "professionals." 

We have recently been at hemonc for blood work and everything looks great.  Not that we expected anything different.  Our big multi-discipline apt. this summer went well and everyone was very pleased with Cooper's progress.  We were given a much needed pat on the back, but were pressured to get going on somethings that have been placed on the back burner.  Hand surgery, colostomy take down.   We left with lots of referrals, hence the new docs.   Sometimes I'm not sure if people realize you actually have a life and other kids with lives of their own, you can't run to Dr.'s apts. 24/7.  Although I do a pretty good imitation of it.   Oh well, I'm nobodies pushover.

The most recent thing Cooper has had going on has been eye surgery to straighten his eyes out.   At least he was supposed to have surgery to straighten his eyes but things worked out much better.  We went into the hospital yesterday for surgery and after a 1 1/2 hrs getting an IV started and a 1 1/2 hr eye exam under sedation we were able to talk with the Doctor.  After getting a good look behind the eyes he discovered Cooper is much more far sighted than he could tell in the office.  Kids compensate for this when looking at things close up by turning their eye's in.  He felt with some glasses his eye's could be straightened and that we shouldn't do anything to his eye's unless it was necessary.   With his small eyes and bad left eye it wasn't worth the risks.  Darrel & I were totally happy with this outcome.  Poor guy is going to have so much head gear.  I'm sure he'll look pretty cute with his glasses, just like Dad!

Coming up I'm hoping to meet with a Dr. soon about getting Cooper's colostomy pulled down this spring.  We are really hoping that we get the green light on this.

Cooper keeps me super busy and with the girls schedules sometimes I don't know what day it is:)  But I am also so lucky to have 3 great kids, who are healthy and happy.  Something not to be taken for granted.  Fanconi Anemia is a terrible disease but it has the most amazing kids and FAmilies.

*Sorry for any spelling errors;)
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