RobertsFamilyBlog

Now that Kahlia's heart has been repaired - and she is doing better then ever - we are on to the next "item on the agenda" as it pertains to her health. As I have mentioned before, Kahlia's health has been kind of like peeling an onion - as we uncover one layer, we keep finding more and more "layers" to have to deal with - one level at a time. In addition to preparing for her Cleft palate surgery coming up on Dec. 1, yesterday we had an appointment with Kahlia's new Endocrinologist - she is from OHSU, but comes down to North Bend 3 times a year - fall, spring, and summer. Her name is Dr. Hanna. In addition to her heart defect, cleft palate, chronic ear infections, and DiGeorge syndrome, we are also dealing with Endocrine issues - issues that have to do with her Pituitary Gland. This gland deals with 4 areas - but we're not sure she has problems in all of the areas - only time will tell now that she is completely healthy with her heart repair. We know for sure that her adrenal stimulating hormone is only at about 50%. That is otherwise known as her "stress hormone". Without a functioning stress hormone, she would not be able to withstand major "stress" to her body i.e. sickness, surgery, etc. It could even result in death because it would be too much of an overload for her body to take. So, luckily they tested her for this BEFORE her heart surgery, and she has been on hydrocordisol (the "steroid" that our bodies normally produce naturally) to bring her up to the level that we are. She will have to take this for the rest of her life. :-( The other functions of the pituitary gland is the thyroid stimulating hormone (growth metabolism) and her growth hormone - in which we are unsure if her lack of growth is caused from malnourishment and low oxygen/blood flow, or if it is truly a growth hormone difficiency. We will measure her in March - and at that time we will be able to determine whether she will have to take growth hormones or not. I sure hope not - we would have to give her daily shots for all of her growing up years - yuck! The final function of the P.G. is puberty - which we do not know at this time if she will be effected. She could be fine, or she could lag behind in pubery, or puberty could come prematurely - luckily if either of these happen, they have medication to start or stop her bodies natural course. So - here we are - learning more then we ever wanted to know about how our bodies work or do not work. All I can say is she is lucky to be alive. She survived through so much with such little medical care - I really believe with all of my heart that she is a little miracle.
Today she started walking along furniture - first on the benches at our kids' swim team practice, then at home on our couch. She is getting stronger and stronger by the day, and has just as much or more energy and appetite then our other kids at her age. She is doing remarkably well - I am so very proud of her - she is my hero - at the age of 2! :-)
A week from tomorrow is our appt. at OHSU - for Kahlia's pre -op appt. for her cleft palate.
If we're not dealing with one thing, we're dealing with another. Brendon had a doctor's appt. today, and he will be having minor surgery coming up next month as well. This has been quite the medical year. 3 of our 4 kids will have had surgery. Luckily - Makenna, Scott, and I have had no medical issues what-so-ever - hope it stays that way! :-)
As always, we cherish all of your prayers. Scott did not win his bid for House of Representatives for District 9. He put up a big fight - and only lost by 4% - with only spending 20% of what his opponent Arnie Roblan spent. I say he did an amazing job - I am so very proud of his efforts and his willingness to stand up for what he believes in. When it is all said and done, he can walk away from this campaign with his integrity still intact. He was a GREAT example to our children on how to run an honest and "clean" campaign - and if anything good came out of this experience - I know one thing is for sure. Our kids now know more about politics then probably any other children in our area. They were completely submerged with what was going on. Arnie Roblan, Art Robinson, and Chris Dudley were household names. I am proud of Scott and our family for standing up for what we believe in. We'll see where this leads Scott in the future. Our motto for this year has been in all areas of our life: GOD IS IN CONTROL! 2010 has been quite the year - and it's still not done. Whew!!! I'm holding on to the reigns for dear life, wondering what is around the next corner - it seems to be a bumpy and adventurous ride - I'm looking longingly into the future - hoping and praying for calmer times. Through it all though, I know that God only gives us what we can handle - and apparently he has entrusted us with a cup quite full this year - Lord? Could we have a smaller cup next year? :-)