G.I.F.T Day....

Today is the day...

This is the day my baby at 7 months old took a horrible fall from a grocery cart, and God revealed her horrible secret. CANCER! 

My buddy, Ethan (this is him trying on Britt's glasses...she's blind), had his 14th birthday yesterday while I was at St. Jude with Ivee doctors trying to come up with solutions to save her from another surgery. So many times we as a family have had to put normal celebrations on the back burner to help Ivee live, or get better. Ethan knows we will celebrate he and dad's special days when we get to Houston this weekend, but I'm sure he was still bummed. That is, until he got home 

and discovered his broke, older sister (who got THIS shirt from her besty!) had scrapped some money together and bought him a small cake, a donut, and popsicles. She barely was able to shove 14 candles on that tiny cake and quickly sang to him so he could blow out the candles. That's when I knew that we have done something right in the middle of all our struggles and my absence in the last seven years. It's hard enough to meet all your kids needs when your home life is "normal", but it is a true struggle when you have a child with constant medical problems, hospitalizations and constant traveling. But when I see my kids, my marriage, and this journey, I am reminded of what I learned seven years ago...G.I.F.T...God is Faithful and True. 

This girl and I got home last night from our whirlwind trip to Memphis. 

Medically

The pulmonologist spoke to her partner/boss and he said Ivee would benefit from a CPAP machine. So  tomorrow that will be delivered along with a suction machine, to help me get the secretions out of her throat in the morning or when she's sick. The oxygen will go through the face piece of the CPAP machine. We will have to return to Memphis in three weeks to see if it's helping. *sigh

I am grateful I have to make the trip, however. I feel like I should sing that song ..."I would walk 500 hundred miles, and I would walk 500 more".... Luckily, I get to drive. 

My prayer is that all this machinery and treatments will get Ivee to a healthy state of not needing a tracheostomy by a long shot. The concern with a child whose been what she's been through, especially the brain surgeries and double radiation is nacrosis (death of brain tissue and vascular breakdown). If Ivee's lungs don't work well, the oxygen doesn't get to her brain. Not enough oxygen leads to nacrosis, and she's already at risk. 

She's had a few headaches this past month and scans are not until February. I'm not concerned about any tumor being present, but I will be a little anxious to see how the contrast dye looks showing the health of the brain and tissues. 

And let me say how incredibly thankful I am for friends and family who go with me the 14 hour drive (round trip) to these appointments. If They didn't, I would have been alone when I've received some very bad news at times. And this time, my friend, Cathy, had to be a mule. I still can't lift really heavy things, and Ivee's medical suitcase is heavy. Cathy had to load and unload the car, and get Ivee in and out. She has made the trip many times, even short notice. I think she's been as much as my dad, who helps me out often..

Ivee's face sums it up. Life is hectic here trying to prepare for a Christmas trip to Emmett, praying the mechanic finishes fixing my car tomorrow, packing up all we need to take, finding a home in Houston while I'm there, coming home to pack up the house, and then finding the cheapest and easiest way to get it all to Houston, while getting Brittney through her graduation finals, finding Ethan a new school, and finding a whole new network of doctors to take care of all of Ivee's issues. (We will continue her cancer protocols at St. Jude. That will not change, 

It's ...craycray! That's all I can say. BUT...I know where my strength comes from. It comes from The Lord....and it comes from you all! Your encouragement is tremendous. I think you have no idea what your prayers have done for this family, what those little words you post mean to us. I don't know if you know this, but I don't tell people I'm praying  for them, if I'm not. I feel like a liar if I say that, and don't follow through. So, if I say I am praying for you, I am! I believe all of you are the same! I've seen the evidence of it in my life. Thank you friends! 

Answers?...?

I have put off writing this blog, and I have written it and saved it, and returned to see what else I need to say. Now, I'll just leave it alone and publish the thing! 

 First a picture of my heart! 

The first reason I've struggled with writing anything is that after we got back from Memphis, I had to prepare for surgery. I had a hysterectomy the Tuesday before Thanksgiving, and I had no idea how exhausting it would be to recover. Emmett had to leave the Sunday after to go back to Texas and I have been relying on my children and family to help me. Ivee also became sick that week, so she missed school. 

The second reason I put it off is there was just so much I wanted to scream out and I really needed time and a filter. I won't go back and relive all that my mind has been wondering, but here is where we stand right now. 

We'll begin with the priority, which is most of the time, Ivee's health. Many if you know that since her tumor relapse in 2011, Ivee's health has declined. The continued damage from surgery and radiation has played havoc with her sinuses, vocal chord paralysis and lungs. Mind you, this is all related to brain damage. This was why the sleep study was so important, especially after we discovered that she aspirated her secretions. 

The sleep study reveals that she does obstruct her airway multiple times in an hour, roughly every 3.75 minutes. Her O2 while awake stayed in the 90s, but once she was asleep it stayed in the upper 80s. Unfortunately, quite a few times it dipped below 80 and even once went down to 58. (I am not convinced that the sensures always work correctly) but I do believe the 80s is correct. In the morning, they drew a blood sample to check the carbon dioxide in her blood stream, and it was in a quite uncomfortable range. 

Due to the results of the test, we began Ivee on a regimen to have breathing treatments, two different kinds, and a cough assist treatment every morning and night to try to get her secretions out, and do this multiple times a day when she is sick. We also put her on oxygen at night while she is sleeping. After a Pulsoc Symetry Study at home, we found that she stays in the 90s 55% of the time and did not drop below 80. Though this is an improvement, this is not solving her problems. 

This is what leads us to our tough decision and heartache. The ENT and pulmonologist have meet together to discuss the options, and they feel Ivee needs a tracheostomy. 

I am mad, hurt, and desperate to not put my daughter through one more hellish surgery and have one more foreign object put in her body. To have more set backs when she has come so far!? I've cried, gotten angry, and have calmed down. I didn't want to get on Skype and tell my poor husband one more bit of bad news that has seem to come in a never ending stream since he left for TX. But, we talked, we've come to an agreement and we are pressing forward as we always have to do. 

The plan, as of today-  Ivee and I will go to St. Jude Monday/Tuesday to meet with her pulmonologist and oncologist. We will get information about doctors at Texas Children's Hospital and I will leave with the appropriate medical files I need to get a second opinion. If for no other reason, this is the reason why we have been moved to Houston. Ivee will have a team of doctors in closer proximity to her that can help us with her lungs, throat, GI, orthopedics and therapies. We will find what she needs and we will get through this obstacle as we have always done for the last 7 years. And...we know God has this! 

Our goal is to get to TX as soon as I can. Britt graduates early on Januray 10th, barring that she past all her final exams. Emmett hopes to have enough money saved to get us in a rental property. We pray the house sells by the end of December/January, or we are able to get it rented/lease purchased. 

In the meantime, while I am recovering well from surgery, I still cannot lift anything heavy, but will be trying to pack all that I can in the house. If I don't need it or really want it, I guess I need to have a moving sale. 

We have our seasons here. Sometimes we are on the mountain top, and sometimes we are struggling to stay afloat in the stormy lake at the bottom of the valley. Through it all, I've learned to trust in Jesus. I have decided to not send Ivee back to school. I sent her yesterday, before I received the news, and she came home feeling puny and has declined since then. I will be homeschooling her during this transition, until we get her help physically. So, that maybe for a long time, but I'm in this to the finish. How could I not be?! 

I've got this cutie counting on me. 

Say a prayer, or a thousand, for us. I know so many of you have never stopped praying for my family and my sweet girl. The Lord has been good to us, and in my human and feeble mind, I am so easy to forget how far we've come in these long 7 years. 

"When leave like a river, attendeth my way

When sorrows like sea billows roll

Whatever my lot, Thou has taught me to say

It is well, it is well with my soul."

-Horatio Spafford-