Macey and Houston (RMH)

sitting on the porch reading before bed

God's Hands

Today at clinic we were told that Macey's immune deficiency has taken on a new component. Her T-cell memory is low and her NK cells are low. Those terms are probably greek to most but dreaded to us PID parents. The NK level could be a fluke but the memory is a new low. With no new infections (minus all the skin ones) she really is showing the hand of God on her that she is not so much sicker.

We will also refer to another one of Dr. K's sources for more on the Alpha 1 level. This doctor is with the Mayo Hospital.

The extra bloodwork (all 40 cc's) was overnighted to the nurse at NIH and when that is run we should know when we have to take her back for another scope.

Anesthesia preop is tomorrow for the dental surgery then back home till next week.

Lake Sinclair tubing

Day at the lake

Macey went to the lake this weekend for what I truly believe was the first time ever.  I can not for the life of me remember her ever going in a lake before this. We have always been warned off from allowing her in a lake due to the bacteria and fungus. There are certain things in it that would not do well if taken into her lungs and also things that could settle in her stomach and cause a ton of mess.  But we were invited to the lake by friends from church and I could not deny her this experience.

We arrived at the lake at 10 am and didn't leave until 5 pm. And she has been no good to me since. :) She had the time of her life. She had a smile on her face the entire time.  

She drank plenty of fluid during the day but ate very little and hasn't eaten anything today. But I think that has alot to do with fatigue and not stomach.

Band camp starts tomorrow and Tuesday/Wednesday we will be at Egleston for clinic visits. Immunology and pre-op with anesthesia for the dental surgery.  We're hoping to get some school shopping done also.

Weight is holding steady with no dips since being off the steroids but her activity level will be off the charts this week with 12 hour camp days so please pray for cooler temperatures, a calm tummy and a good trip to Atlanta.

Also a shout out to Macey's band directors, Mr. G and Mr. C for being so understanding and working with us on the crazy schedule the next two weeks.  She is really looking forward to the new show and uniforms.

Ronald McDonald House Charities Video

We are so grateful for the 13 years of dedicated service that the Atlanta Ronald McDonald Houses have given us. The majority of our stays have been at the Egleston campus house but we have had one or two at the Scottish Rite house. The amazing thing about these houses are the support staff that provides so much love and support for all of these trips. Each stay has involved uncertainty with clinic visits, surgeries, tests and procedures. We have been so blessed. Even now at 15 years old Macey will is able to stay at the House and not be as anxious about her hospital visits because there is a respite from the pokes and tests just around the corner. Please support your local Ronald McDonald House and help provide a home away from home for these children.

JMF Family Fun Day 2010

Family Fun Day album

Macey and Dr. K

We have been truly blessed with a most wonderful doctor to take care of Macey in Atlanta.  Dr. Lisa Kobrynski has been Macey's immunology specialist for the last 8 years or so.  She has done an amazing job of keeping Macey well, coordinating her care amongst several other specialists and putting up with my many questions and tirades.  Dr. K we think you're the bomb.

JMF Family Fun Day 2010 with the Atlanta Braves

Dying for Help Trailer

Final week of Entocort

After Macey being on the Entocort for close to two years now it is hard to believe she is almost completely off.  She is in her last week of 3 mg and then the true test begins.  She has band camp the last week of June and the first week of August.  That will be stressful and her appetite will be low because of the heat.  ALso she has dental surgery that week in August under general anesthesia.  The preop visit to get lung clearance will also include a lab draw for 40 cc's of blood for more specialized testing that the NIH wants.  The cytokine (inflammation markers) testing came back abnormally high so they want to redraw it to confirm the results. This testing indicates that Macey does have an IBD but they are unsure which.  Because her immune deficiency complicates her pathology for true IBD confirmation they have resorted to lab testing that shows documented evidence of a disease process.  I'm getting the jist that in the end all of this will be written up because it is a unique way of determining her IBD. Also in late August or early September we will return to the NIH in Maryland to have another colonoscopy. This will be her first one in 2 years off steroids.  If she has any weight loss or is symptomatic any sooner we will go ahead and go up and have the scope.  She seems to be doing well coming off the Entocort except for some extra tummy pain and bathroom trips that were around the week of her cycle.  But that always seems to be a bad week for her even on drugs.  We've also started taking her down on her Hyoscamine dose (Levbid).  She now only takes it once a day instead of twice.  Hopefully the dental surgery and anesthesia won't mess with any of this and things will go well.  School starts back here August 9th and she will be a Sophmore with two advanced classes (AP World History and Accelerated Math II).  Her language classes are over because she finished her second year of Spanish due to being in an advanced year of that. This year she is registered for Beginning Movement (Dance) and Beginning Drama.