Monday, October 31, 2011

What we know so far...

So the results from the MRI were not what we had hoped they would be. We were told that Kai has a "fatty intrusion" on his spinal cord. I did some research and basically normally the spinal cord is free and just secured by an "elastic band" at the end. It needs to be free to move and bend, etc as a person grows. If it is "tethered" as Kai's is, it just stretched which can cause problems with the nerves, etc. Even though he doesn't have any symptoms that we know of now, if they don't correct it, it can lead to a whole host of problems later on in his life. Any of you medical people out there, feel free to correct my info, because this is just info I've gotten off the internet, so PLEASE correct me! I am in the "researching" phase right now, just trying to find out all the information that I can!
To start from the beginning, we got a call last week from our PA that we work with in the pediatric speciality clinic that she had talked to Dr. Pitcher and the Radiologist and they both agreed that Kai needed to be referred to a pediatric neurosurgeon. My heart just sank. "Neurosurgeon" sounds so scary when its in regards to my precious little man. She assured me that the doctor that we will be seeing is a world renown pediatric neurosurgeon, so that made me feel a little better that it wasn't just some Joe-Schmo just out of med school that's going to be operating on my baby's spine! We are now just waiting to hear back from the doctor when he can squeeze Kai into his clinic schedule. I just called this afternoon, and there are several factors that they are waiting on to determine the doctors schedule, which will determine when our appointment with him is. Sounds like it won't be several weeks for sure, which isn't what I wanted to hear. I have had a headache since I heard "referring to a pediatric neurosurgeon" so a couple weeks isn't my ideal, but I'm learning to be patient! The lady I talked to said that surgery was much easier to schedule because the the dr has 1 clinic day and 4 surgery days per week, so hopefully it won't be too long after his appointment that he has his surgery.
To be honest, I have good days and bad days. I have to keep myself busy and try not to think about it but it's definitely hard. I don't sleep real good at night and like I said, I think I am destined to have a permanent tension headache until this ordeal is over! :) I am trying hard to keep reminding myself that nothing in my life is outside the plan of God and to have peace and rest in His love, but most of the time I am absolutely terrified. Most of my fears are probably completely illogical, but even though my head knows that, my heart just can't seem to catch up. He is such a happy baby, so it's hard to be sad when I see his little drool-y grin with those 2 little teethy peeking thru. :) It's a definite postive that he won't remember all this. I have kind of started a journal because someday I know he will like to know how I am feeling and all the details that might slip our minds as the years go on and this ordeal becomes a distant memory. Thank you all for your prayers. We value them all more than you know-please keep praying!
Love to all~

Thursday, October 27, 2011

Little Update and Some Cute Pics! :)

Thought I would just give a quick update on my little man:

Tuesday went well. I had to wake Kai up at 5 so I could feed him since he couldn't have anything after 5:20 AM due to the MRI and anesthesia, etc. He was quite confused when Daddy brought him out, but woke up enough to eat and went back to sleep thankfully. When we got to the hospital, he was such a happy little guy. Everyone was commenting on how happy he was and how much fun he was to play with. I know they probably say that to lots of people, but it made me feel better! :) He was EXTREMELY wound up and hyper for some reason-he was jumping all over and wiggling like none other-all while smiling and talking to anyone who would pay attention to him! :) The IV went ok. They put some numbing cream on both hands, inside both elbows and on one of his feet, so that was nice. When it was time for the IV, a lady from a department called Child Life showed up with a HUGE bag of toys. Her sole purpose for being there was to distract my baby so it didn't hurt so bad! What a cool job! She had all sorts of fun toys that he was more than happy to play and make noise with. When they started to put it in, I could feel myself getting very worked up, and then he made a little whimper and I just had to get out of there. Sam was holding him, so I went to a different room and plugged my ears. Looking back, the staff probably thought I was losing it! Sitting in an empty waiting room, tears running down my cheeks, with my fingers stuck in my ears so I couldn't hear my baby cry! I felt awful leaving him, but I didn't want him to pick up on my anxiety, and Sam the Superdad was there, so I figured it was probably best to just get out. Sam told me later that he didn't even really fuss-the only time was when they were holding his hand still and he wanted to move it! So thankfully the cream must have really worked. He has a couple bruises where they tried to get it in and it didn't work, but they don't seem to bother him. It took him a little while to fall asleep and he did cry then, but that was more a tired cry, not an owie cry, so I could handle that. There was a rocking chair in the room, so I could hold him and rock him to sleep which was just what this Momma needed to do.

Sound asleep, heading off to get his MRI

The MRI didn't take too long and then we headed up to the Ped Surgery Clinic for him to wake up. He was kind of a little stinker and didn't really want to wake up. It was pretty cute actually. We were trying to wake him up and he just kept whining like "MOM! I'm TIRED! LEAVE ME ALONE!" :)

This picture CRACKS me up! He was so tired, but we kept messing with him and I think he was getting hungry at this point too. I just love his facial expression. :)

He finally woke up enough to nurse and then fell back asleep. I think I needed to nurse and snuggle him as much as he needed me, and knowing that I was able to be a comfort to him went a long way to soothe this anxious mommy's heart. He slept until about 3 that day, and has been pretty normal ever since. He's got that nasty cough that's going around, so that's making him a little crabby, but no big deal.

The PA that I talked to on Tuesday called yesterday and said that Dr Pitcher was gone for the day and she wanted to talk to him before she gave us the results, so I am still trying to be patient and wait on Him! Thank you to all of you who have e-mailed, texted, etc letting us know that you are praying for us and thinking of us. It REALLY means a lot! Please keep at it and I will let you know when we know more!

Wednesday, October 26, 2011

Enjoying The Love of God

Sitting here rocking :) and trying to wait patiently for a call with Kai's MRI results. This morning I was a mess to be honest. I know part of it is nerves and part of it is that I am exhausted from the big day yesterday, but I am just so nervous, anxious, overwhelmed, slightly terrified, not sure what I am hear the findings. I was kind of dinking around doing little odds and ends this morning and decided that the best thing I could do was read my Bible. I was just kind of flipping through Psalms and came to 103. Verse 11 says "For as high as the heavens are above the earth, so great is His love for those who fear Him." It struck me as I was sitting there-I am scared and nervous because I love my baby so much, but God's love for me is even greater. Sometimes I have to do things for Kai- things like shots, IVs and MRI's-things that he doesn't understand why I am allowing people to do that might hurt or be scary to him, but I allow them because I know that that's what's best for him. I love him so much and this is the process that needs to take place for him to be safe and healthy. The same way with God. He allows things to come into my life, even things that are scary and hurt me. He has a plan that is only with my best interest in mind because He loves me SO MUCH! I can't say that I immediately felt perfect, but my heart is much lighter. No matter what happens, I know that God has a plan and a purpose and whatever happens, I need to do as verse 1 says: "Praise the Lord, O my soul; all my inmost being, praise His Holy name." So Happy Wednesday and my prayer is that you are enjoying the love of God and praising Him as well. :)

Monday, October 24, 2011

Family Update and a Prayer Request

It's been a while since I've had a chance to post on here, so I thought I would just give you a heads up on what's been going down with the Brandt Family 6!

Claire has finally decided to be potty trained! I say that she has finally decided because we have been working and working and WORKING on it for MONTHS but being the stubborn little thing that she is, she pretty much had to decide. So, one day she just decided that she wanted to wear undies and has had VERY few accidents ever since! I don't even have to remind her-she just goes like she's been doing it for years! What am I going to do with that girl....

In the last week or so, Kai has gotten 2 teeth, started sitting on his own, is now army crawling wherever he wants to, and rocks on all fours-crawling will start soon I have a feeling! :) He also is now "talking" and has discovered how to holler loud enough to keep up with his siblings! He is still a happy guy and brings so much joy to our family.

We are still dealing with lots of colds in our family. I had a sore throat for couple days and it was downhill from there for the kids. Seemed like we were at the doctor just about every other day for a while there! We're talking spiking 104.5 fevers and horrible coughs. Darren and Claire were sick FOREVER and still cough quite a bit, but they are on the mend. They both seem very tired still, so I think it took a lot out of them.

Sam, Kai and I are heading to Iowa City tomorrow for an MRI for Kai. I think I have mentioned before that there is a syndrome that can be associated with his malformation, so they have to check for tethering of his spine. They had to wait until he was 6 months old because he has to be sedated for the MRI. I know that more than likely he is going to be completely fine and the MRI will show perfect results, but I am still scared/nervous/worried...I don't even know how to explain it. He has to get an IV for the sedation, which makes me want to cry because of the last time he had one. Granted, it was when he was 2 days old and dehydrated and I was post partum hormonal, but it gives me a pit in my stomach to even think about his pitiful little screams as they tried and tried and TRIED to get that stupid thing in. I will never forget that feeling as long as I live. They called from sedation the other day to get some information and tell me about the procedure, etc and said that I can hold him and they will rub some medicine on him so it's not so traumatic for him (and hopefully me! ). Plus, even though I know he's more than likely going to be fine, there is that very small chance that they will find evidence of tethering. I don't even know what they will do if they find it, but my guess would be surgery and that scares me to death. My mind gets going a million different directions and I start to think worse case scenarios and that makes me crazy. I have been earnestly praying the last few days for God to help me to leave my worries in His hands, knowing that He holds the future and all things are according to His plan, but would appreciate your prayers for this and for my baby as well.

As I type, said baby is "helping" me :) so I should probably wrap this up and get that washing machine going again! Have a wonderful Monday-it's a beautiful day!