Thursday, May 20, 2010

We Keep Going

I took Braedon back to Children's Hospital today to meet with the GI team. They came in and evaluated him, took a diaper sample from this morning and left the room for nearly 45 minutes. When they came back, they sat down, looked at me and said, "We have no idea what is wrong with your son." What horribly frustrating words to hear but comforting at the same time. I was so happy that they weren't trying to lie to me and comfortable telling me the truth. It was so frustrating that there still, is no idea.

What do we know?

Well, we know that he is still having blood in his diapers. The stool samples taken in the hospital came back clear for bacterial growth and infection. We know that his weight right now puts him in the 35% for his age where as in February he was in the 68% and at birth was 98%. That is not good. We know that something is wrong and thankfully the GI doctors still have some ideas up their sleeves while we are waiting for the mitocondrial tests to come back.

I expressed my concerns over the fact that no one knows anything and he is 18 months next week. I expressed that I have started doing research on my own in an effort to advocate and help search possible conditions. Instead of being brushed off, Dr S sat down, stopped what he was doing and asked me what I thought it could be.

I told him I was concerned about the autoimmune disorders since we know some are on both sides of the family. They have only tested one and there are atleast 5 or 6 more that I researched. He agreed and had that on his list. We both suggested Cystic Fibrosis, I have thought about that for a while and he actually brought it up so we are doing a sweat test next Thursday.

He said there are a few other things he would like to consider but would like to get the sweat test done and some more allergy tests done that he said were not normal allergies (I am wondering if it has to do with antibodies we carry and how some people actually have an allergy to them; it is part of the auto immune diseases).

So, we don't know any more and no less. They have put him on zinc, probiotics and more erythromicin to see if we can boost his weight again and the antibiotic to help wtih the digestion problems. He has been getting worse again the last two days and I have wonder/fear what tomorrow may bring just by the way his diapers have looked today. We will see, I am praying everything is fine and he remains comfortable. He has not been sleeping much at all and that has us both tired and moody.

I hope this helps, I am trying to keep everyone updated as soon as I can. I have been a little overwhelmed keeping up with him and Caileigh's last week of kindergarten that the house has suffered and so has my correspondence in how Braedon is doing. If anyone has any questions or hasn't heard from me, please give me a call or email me with your questions.

Tomorrow I have some absolutely beautiful pictures to post of our kiddos. A friend of ours took them back in February and it took a bit to get them due to prior commitments (which was no problem at all) so I am just now getting around to uploading them. Check back tomorrow for some very beautiful and colorful pictures of our babies. :)

Good Night!

Monday, May 17, 2010

No Masses!

We had our followup with the neurologist today. She was excited to inform us that there are NO MASSES OR TUMORS on Braedon's brain!!!!!!

We are so excited and releaved about this! She wants to monitor his development process over the next six months to make sure he is on track with his speech. He has a few "words" and I say that loosly because to anyone besides immediate family, they don't sound like words; except "mama" that is a wonderful word that I love to hear. :)

She doesn't have any test results back yet and unfortunately the mitocondrial tests that everyone is particularly interested in will take forever to get back; like it could be late June at earliest that some of those start coming's a waiting game.

Yesterday I sat and listened to a wonderful and much needed sermon. It was on being in God's waiting room. Sometimes just being in His waiting room is what He has called us to do. To see what we will do while we are there. Sometimes there is nothing more, no perfect job, perfect house, etc. Sometimes He just wants to see what we will do in the midst of waiting and how we will portray our love for Him to others during that time. When we cloud our lives with worry and stress and complaining, we ruin the opportunity He has given us to wait and wait patiently on Him.

I am taking these valuable lessons and trying to apply them moving forward. I need to give it all to Him and I am trying, I really am. I am praying God gives me the insight to see what I can use this waiting time for to glorify His kingdom.

Right now, I am cherishing my children, rejoicing in a clean MRI and blowing bubbles in the backyard with the two most beautiful gifts I have ever received. :)

Sunday, May 16, 2010

Bring on the results!

So, after posting in the very very early hours yesterday morning because I couldn't sleep, I finally went to bed. At 6:45 my sister left for the airport and about 45 minutes later, Braedon started throwing up violently. He was like that until about 1030 before the vomitting slowed down. The vomitting also brought on the diarrhea. Friday night he missed one dose of his medication, I didn't think it was that big of a deal or I would have woken him up when I realized it. The last few days I have noticed him not doing as well as he was right after we started the medication. Yesterday morning was horrible, you would have never known he had been on medication at all.

I was so discouraged. I was so angry and I spent a few moments yelling at God to make sure he knew I was angry that Braedon was sick again. Poor thing would just crawl up onto my chest and lay there.

Today has been better. He only vomitted once, the diarrhea finally died off a bit this afternoon. Thank goodness! We have not missed any of the medication today and I won't make that mistake again. :)

Church was very convicting this morning. I attended Seacoast Church online. I love that church! The sermon was on God's waiting room and what things can make us miserable while we are in the waiting room and how sometimes God's calling is simply for us to be in the waiting room. Brought a lot out in front for me to think about and pray about.

Tomorrow morning....or later this morning if you want to be technical about it, we go to meet with the neurology team. We will find out what all of their tests showed, including the MRI. I am nervous and really not wanting to go by myself but no one is going to be able to go with me. Please pray that they are able to tell me what his episode was two weeks ago when he was admitted. I say that hesitantly because I dont want anything serious to be wrong that cannot be fixed easily.

I also have appointments with his primary, the gastrointestinal team, ENT, allergist and I think I am missing one over the next week and a half. Please pray these go well. It is still too early to get genetic results back from what I have been told. It will most likely be the end of June at the VERY earliest.

I am going to head to bed now so I can get some sleep. Braedon has been waking up crying a few times already but has been able to go back to sleep alone. Please pray tonight is not like yesterday morning.

Saturday, May 15, 2010

Trying to find a peace

We still don't have any word on any results. I have 5 appointments already made with Braedon's specialists this next week and two more to make Monday. I am trying SO. HARD. to be was a very hard day.

Braedon didn't sleep much last night, he didn't throw up but was very restless and screaming out in pain before calming down and falling back to sleep several times. His diapers are getting worse again, they most often look "radio-active green", I swear they could glow in the dark. He is getting more restless and discruntled during the days and sleeping restlessly during his naps.

I am so tired and so drained. I had a followup appointment with my primary yesterday and the receptionist, a wonderful woman and new mom, noticed I "looked exhausted". My primary asked how things were going, she called me two days before Braedon ended up in the hospital. I recounted everything quickly and she kept telling me how strong I am. I don't feel strong. I am struggling.

I am struggling with how to be strong for my kids. I am struggling with how to care for Braedon and cherish every minute while in the forefront of my mind I am constantly aware of what lies ahead of us if we receive positive results for some of these disorders. It is tearing me apart to know the prognosis is not good, that some doctors only give life expectancies of a few years to a max of living until age 30ish....that is NOT acceptable.

I am struggling to find peace in this and know God is in this no matter what. I fear losing my children; a mother's deepest fears I think. I am struggling with how to resist looking at anything else on the internet and journals until we hear from doctors. I am struggling with how to set Braedon aside and give Caileigh the time she deserves to have and needs badly. I struggle with the thought of missing any part of Braedon, with the thought of missing any part of Caileigh.

I need peace. I need answers and for them to be ok and for God to give Braedon the miraculous healing he needs because I am so tired and am finally realizing I have to give up all control to God. I have realized this week there is absolutely nothing I can do. It's almost as if God has given me several chances over the last 29 years to give it all up and I have never been able to do it; the circumstances have never been great enough. Well, now they are. I HAVE to give it all up to Him. I NEED to give it all up to Him. That honestly scares the crap out of me!

My sister flew into town for the week to be with me and the kids, and to help me with Caileigh. She was amazing! I miss her so much; she is my best friend. She and I had a chance to sit here and talk today while Caileigh was in school. It was so good, so healthy. I cried a lot, so did she. We have made a "To-Do"  list of things I need to do in steps to help myself move forward. There are things for my marriage, for me personally to grow and become the person I used to be, things to help me as a mom and things for me to do to be able to give it all up to God and rely on Him the way I expect to be able to do with Soapy.

SHe said something that really stood out to me. I am looking to my husband to support me, encourage me, fill me and comfort me in a way that is totally impossible. It is just a very unrealistic expectation. She told me that God needs to be able to fill those needs for me and He will if I let Him. She related it to a first romance, you know, the kind you have in high school. The kind where anything is possible, the person is the most perfect guy you've ever met. They do everything right, you will be together forever, blah blah blah. :) Well, she said that is a glimpse at the kind of love relationship we are to have with God. Once that first love ends, we are hurt and our perception of love changes forever. Most women put such high expectaions on their husbands and it leads to such problems later in their marriage. Their husbands feel defeated and overwhelmed and unsuccessful at being the perfect husband. The women wonder how they could have married someone so wrong for them who doesn't fill their every need.

Husbands are not supposed to be able to fill those needs. My sister said, about her own marriage, that there are things she always imagined having in her marriage, that her husband would do for her that he will never do; she will never get them. That's ok, he's not supposed to. God gives you just enough love on earth to keep you wanting more in Heaven. He has given us a companion to live life with that we can love but not whole heartedly. If we loved them whole heartedly and they fit every pre-requesete we had, we wouldn't need God in our lives. God is to fill the voids of our life, of our marriage. He is to be our true love.

This is the peace I am dwelling on tonight and reminding myself as many times as it takes to keep myself looking forward and positive and committed to caring for my children and finding my son the best care possible. GOD is going to take care of us and of Braedon. I am praying if these results come back positive that He gives a miraculous healing because that is what it's going to take. I am praying if they come back negative that He gives a miraculous healing and totally baffles the doctors. Either way, I am praying...praying...praying.

Please be praying with me.

Wednesday, May 12, 2010


I am so releaved to have my sister here for a few days. She flew in Tuesday after the MRI and is staying till Saturday morning. I miss her terribly and wish she could just stay forever. It is so nice to have her here.

Braedon finally came out of the anesthesia yesterday. It took about 1-2 hrs for him to calm down, he was SO violent, including punching and kicking, biting and screaming. It was a bad site; definitely not an anesthesia I will encourage again.

Today has been a little disappointing, Braedon has started to show signs of going backwards again. He has been highly aggitated all day and his temper has had total meltdowns at a drop of a hat. He has been very tired but too restless to sleep well. This afternoon I noticed his tummy was very large again and not quite as hard as last week but close. When I got home from errands, we had two loose stools again after having two yesterday that were more or less normal. :(

I am not too thrilled about this. I am so tired and desperately need some sleep. I have already changed his bedding once today and am praying that is it for the night. I need to sleep. I just put him down and am currently waiting for him to fall asleep since we are sharing a room right now.

Please continue to pray for us and for the doctors that they would start to acquire some answers. I have done a very small amount of research in the grand scheme of things and it is concerning and discouraging at the treatments and prognosis given. Please pray that God would keep Satan from influencing my mood and tearing down the hope I know I have in Christ Jesus to heal my son and protect him.

Goognight everyone and may God bless you and your families.

Monday, May 10, 2010

Quiet voices

Tonight it is quiet. I am feeling a bit anxious for tomorrow and for the next few months ahead. I have a feeling in my gut that is making me sick. I don't like it.

But as I sit here, I am hearing a voice and I had to share it with anyone that would listen. It said,

"Peace, I give you peace. Rest, I will comfort you. Pray, I will listen. Breathe, I will protect him. I love him more than you will ever love him and more than you will ever comprehend. It's ok, I know what is happening and what will happen. I have a plan and he is in it, you are in it, Soapy and Caileigh are in it. Take joy in knowing I love him and care for him and will not let you walk this alone."

Comforting words, and on that note, goodnight! :)

Sunday, May 9, 2010

Happy Mother's Day

I am so unbelievably tired and am heading to bed but I wanted to post a quick update about our week.

First, Happy Mother's Day to every mom out there! I hope yall had a wonderful day, relaxing and filled with love. I know for some this can be a hard day for one reason or another and I pray for you that this year the pain was not so overwhelming.

Today was a great day for me. We didn't do much, in fact it was very low key. No flowers, no cards (except one Caileigh made at my parents' church this morning), no brunch or special affairs. Just relaxation, a walk around Garden of the Gods and time enjoying my two precious children.

This past Tuesday, my mom went with my to a scheduled appointment for Braedon at Denver Children's Hospital. On the way there, we believed he was having a seizure of sorts. It was beyond frightening. We got to the hospital and they knew we were coming and were told to go straight to the ER. See, April 22nd Braedon started in with another episode of GI problems except this time they did not go away 4-5 days later. They are still happening. He vomits and has about 12 liquid stooled diapers a day.

Braedon was admitted Tuesday and they immediately performed a CT of his head and abdomen. There was nothing of extreme concern, he had an EEG performed and no seizure activity was reported but they can't rule out epilepsy. Upon talking with several doctors from many departments, countless labs had been requested, most coming from the Metabolic team. They are looking at  a few very viable genetic disorders that would tie in his GI problems that he has had since birth (we now believe them to not be solely related to food allergies if at all) with the spell he had Tuesday.

--Tuesday before getting in the car I gave him a bath. He screamed for 10 minutes or so and then suddenly sat down in the corner and stared at the tub floor. He wouldn't respond to his name, my hands in front of him or toys. We took him out and he seemed to be in a daze. While putting him in the car he went very limp and we had to pull him into position and turn his head just to get him strapped in. --

We left the hospital Friday night but not before we got answers and a temporary plan on how to control his vomitting (the other could actually get worse with the medication they have him on). So far so good! We are two days into this treatment and no vomitting and very little diarrhea!!! Today he ate a little more and actually played a bit with his sister and was happy. We are hoping this treatment will work long enough to get some answers. It is not a medication that is safe long term so we need answers soon and realistic treatment plans.

Please pray for us as we step into this new season of our lives. I spent a large part of the morning researching hospitals that are leading in technology and research for metabolic and genetic testing/treatments. I have a few main locations in mind and am waiting to see what comes back from these tests to determine what steps to take next.

We were all set to move when Soapy gets a job and now we are kind of waiting; waiting to see what is wrong with Braedon and where the best treatment is for him. It is hard to wait patiently and Soapy is getting very discouraged that interviews are not coming in yet but I believe God is waiting to give us a job offer until we know what is wrong with our son. As it stands, daycare will not watch Braedon because of his constant condition of being sick; even though it isn't contagious. They don't have the time to devote or the extra person to devote to him when he is getting sick every few minutes.

Please pray for Braedon that his body would stay strong through all the waiting and testing. He has an MRI Tuesday at 1230 and they will have to sedate him (the last few times he has not done real well with sedation, his O2 sats. drop). We won't know for about a month what the genetic tests will begin to show. We were hoping to be moving to a new job, wherever that may be, at the end of this month once Caileigh is out of school. Please pray for Soapy that God would give him a calm and renew his hope in Him. Please pray for me that I would be the mother and wife I am needed to be right now. Please pray that I am not only able to care for Braedon but also to help support Caileigh, she is showing signs of anxiety from the stress and fear of what is wrong with her brother; she loves him so very much.

Thanks to everyone so far that has been praying for our family and for our son. The prayers mean so much to us. I am going to be talking about an idea I have for raising money to support our family and a charity that is very dear to my heart. The hospital trips out of town are getting very costly and I need to find a way to help offset that cost. Please don't be put off by the advertising or mention of earning money, it is truly to help our son and for that I am not sorry.

Happy Mother's Day everyone and have a blessed week!