Well....
Sam and Sarah have become patients at Arnold Palmer's Complex Care practice. Complex Care practices are generally for kids/adults with special complicated needs. When our pediatrician retired last year we tried to find another one in this area but literally got turned down by several practices because of the kid's ages and needs. Honestly I did not know a doctor could refuse a patient just because of special needs! Sam was even turned away from our adult gastrologist, he did not feel he could take care of his needs.
So they've both had seen their main new doctor (who we love!). She sent them both to several specialists so I had this "great" idea of scheduling all their appointments over a 3 day period. Sounds good right?? WHEW! My head is reeling! We stayed at the Ronald McDonald House and did all these appointments....
Sam Upper GI/Lower GI barium swallow
Sam Physical Rehab
Sarah Gastrology
Sam Gastrology
Sarah Orthopedics
Sarah Endocrinology
Sam Pediatrician
Sarah Pediatrician
Sam Pulmonary (2x one for a walking test to see his oxygen level when walking. Sam was not amused)
Sam also met with a surgeon.....
Plus I did a hearing by conference call regarding their SSI benefits (5 years and counting...)
11 appointments! 3 different buildings.....
SO.....we found that Sam also has malrotation of the small intestines! This is a rare birth defect and should have been caught when he was an infant by the Gastrologist that we saw for 18 years.... yes the same one that missed this on Sarah for 10 years..... I will be sending in a complaint to the governing board of medical license regarding this particular practice! If anyone lives in the Tampa Bay area and wants to PM me if they have a child who needs to or is seeing a gastrologist I will personally tell you our story. My advice is to go anywhere but the Tampa Bay area as this practice is large and extends throughout this region. Sarah especially could have been injured or killed by the things they told us to do (loading her up on laxatives) I'm so glad I trusted my gut. I did not believe she was constipated and was proven right but Sarah had to go through too much before the malrotation was discovered. And it was only discovered because I would not back down and kept forcing them to find the cause of her enormous swelling.
So Sam met with the surgeon and the surgeon believes (as do I) that his malrotation is minor (Sarah's was extremely complicated) In fact Sam's is not terribly "off" so we are going to wait a bit before surgery. In a few months he'll do another barium swallow & reassess it. He will be having a slight surgery to take off the red mole on his nose next week! I can't wait. I hate that mole. It bothers him and keeps growing.
The adult physical rehab doctor does not think Sam has any neurological deterioration based on his physical exam. Some of the things the other neurologist cited are not unusual for people with cerebral palsy. He did give us a prescription for Bachofen just to see if it can help his legs relax some without making him sleepy. We will try it tomorrow.
Most of the other appointments were to get them established with the specialists. I was very impressed with how everyone worked together. After getting the diagnosis of the malrotation, the appointments for gastro and the surgeon were added and all the offices worked together to get it all done. IT was actually "old school" how they all worked as a team. I love it! The drawback is that it is a 2 hour drive but it is worth it! They also are very responsive on "My Chart" If I send a message I get a response usually in minutes.
We stayed in the Ronald McDonald House. I figured out that we have stayed approximately 1 year of the last 18 years in a Ronald McDonald House! Isn't that CRAZY? Most of the time has been in Rochester NY (4 months when the accident happened and 4 weeks when Sam had his cornea implants and then about a week every year there so that would have been about 13 weeks) The other RMHs we've stayed in has been in St Pete and Miami. The thing I love most about RMH is meeting the other families. Most of them are like us and frequent fliers.... you're immediately in "the club" There are a few families who are there for a short time- one time type situation too. But the long haulers usually connect with each other! The thing I hate??? In some of them the families have to clean their room before they leave. It sounds like nothing especially for me cause I like to clean but it is so stressful to be cleaning a room when you and your kids are usually overwhelmed and just want to get home. I'm all about cleaning and straightening up but that aspect just stresses me out completely. Years ago one RMH we stayed at had daily chores for each family as well as expecting the family to clean and mop their rooms before leaving) Well I was by myself with Sam and had just been told that he had brain damage and CP so I was hysterical (although of course we thought he did but to hear it was hard) The manager saw I'd been bawling and yet told me to go mop the living room dining room area before I left or I would not be able to come back and stay there again! It was awful I cried the whole time I was cleaning and I had to bring Sam in his stroller around with me while I was doing the mopping and cleaning our room that I barely stayed in! Again I'm all about cleaning, when we were in NY for those months I helped the staff do all kinds of things around the house in the afternoons and I even cooked supper for the whole house several times. Their RMH does not require parents to do chores nor clean their room when they leave. Of course they expect things are keep clean not trashy but they realize the stress the family is under. I'm not lazy but when you're at a RMH you are not on a relaxing vacation! It's usually a very stressful time. you kid(s) are stressed, things are going on....it rough! Today I was only able to do what was needed because I had Jon to keep the kids. This was an incredibly stressful and busy time for us. I don't think I've ever done something like this I think it's a record to do so many appointments.
Other than Sam's possible need for surgery, both kids got a lot of attention in gastrology! Both of them have been put on some meds to ensure they stay cleaned out. Unfortunately Sarah is still having so much gas her little belly feels like a watermelon after she eats. She has also been put on the FODMAP diet which on top of her lactose intolerance it's going to be hard to make her meals. Luckily I had some frozen home made meals that would fall under that diet in the freezer. But of her frozen meals only a few would work. Luckily she is only on this diet for 6 weeks to give her belly some time to really heal up. The doctor also felt she could have some infection in her small intestines (as did I ) so she got put on antibiotics. Sam got put on a regiment of laxities and stool softeners again to see if we can get him going. Sam eats so healthy it's surprising that he ever has any issues. He loves veggies and hates sweets....He can eat a bag of broccoli by himself no lie! He eats it like I eat candy! The idea is basically his gut moves slow- almost as if he has CP in the muscles of his guts.
Another concerning thing is Sam has lost 16 pounds since January. He has done this before (and ALWAYS this time of year January-April) but never this much weight. A few years ago he lost about 10 pounds and we were all freaked out. This is even more. He doesn't enjoy his food like he normally does. All his tests have come back normal except the malrotation. So I think the idea is they think he just feels bad because he is dealing with constipation. We are doing a clean out and hopefully that will continue with the new meds and plus he usually does better in the summer/fall. One of his chromosomal issues includes seasonal depression....January-April. When I heard that I was amazed because he either is sick or upset during that time of year...every single year! So we are hoping to see a real change in him soon..
Sam was done!
He carried daddy's books
He did pretty good for an hour or two with a mask
My sweet babies
They are so cute
Both of them took naps yesterday LOL
This morning I got up to watch the rocket launch from Cape Carnival. Luckily it was right on time.
My friends were with me
In all of this yesterday was our 10 year anniversary of walking out of the orphanage with the girls!
This picture is somewhere in Doneskt as we did the paperchase the day before getting the girls out. We had just been given their passports and birth certificates naming us as parents.
George our facilator and us. We had the girls in their pretty dresses.
Sarah always looked so intently in our faces. It's almost as if she knew she'd lose that tiny bit of sight one day.
Can you tell I'd been crying a little bit? I was so happy Sarah was still stressed from me changing her clothes. It took her awhile to get used to that.
Me headed out with Selah
this is such an iconic picture for our family
we posed with the director of the institution near the Doneskt train station on the left. Jon was drinking coffee behind us lol
Sarah was so little
this picture was taken 10 years ago in Kyvi after the overnight train ride from hell. I absolutely love this picture. Look where Selah's hand is.... so sweet And Sam with his shirt up....
It's hard to believe a decade has passed....some days it seems like it happened last year others it seems like they've always been with us.
Pray for Sam and Sarah as they begin their new meds...and for me! I'm hoping there won't be too many accidents!
