Tuesday, February 23, 2010

We Are HOME!!!!!!! :)

Monday night, the doctor came in, at 8:30 pm. We had already settled in for the night, ordered dinner from the cafeteria and were getting Braedon ready to sleep. She came in and said we were free to go home, as long as Breadon stays on oxygen and gets regular check ups on his oxygen %. We were tempted to wait until the next morning to leave but there was a snow storm already coming in and was supposed to snow through the morning. I didn't not want to be driving home on bad roads so we quickly rushed to pack everything up and at 10:30 walked in the front door to our home.
Caileigh was already asleep and despite trying to wake her she would not. So Braedon gave his sister a kiss on the cheek and that was that. He was so excited to see her, his dogs and toys. He got too excited and we had to settle him down and up the oxygen for a bit. He rested so well Monday night, slept the entire thing!
We had the home care company come out and bring us oxygen and a nebulizer. He does better with the inhaler (struggling and such) but the results aren't as good so we are going to try and transition him to the neb. instead.
Today he has been very happy and wanting to play more. He is getting worked up easily and worn out quickly. Little steps, one at a time....just try telling that to an active almost 15 month old (tomorrow! he is growing so incredibly fast).
Thursday he has an appointment to check his oxygen and to meet with his primary doc, Dr L. He is going to help me with working out a plan for weaning off the steroids and the oxygen, if he's ready. We are going to talk about Braedon's adnoids and tonsels...the doc @Childrens thinks they may be swollen (too large naturally) and that could be causing some of the breathing problems, along with when he gets sick they cause the opening in his nasal passages to be too swollen for them to drain and for the colds to clear up.
Once the colds get bad then he goes into an asthma attack showing us how he reacts like last week.

On top of the asthma and cold stuff, he was also dealing with a typical food allergy attack too, All things combined caused him to get extremely dehydrated and having difficulty breathing. We are scheduled to see a specialist Dr F at Children's in Denver to persue some GI issues, including EE and EG. These two conditions are eosenophillic diseases that have no cure but can be medically controled along with a diet. They can come across as food allergy reactions but all of his allergy testings are inconclusive. These diseases could bring all of his GI issues to rest. Or maybe not. Either way, GOD is in control and I am remaining vigilant in my prayers and continued reliance on Him.

It is hard as a parent to do this. As a parent all I want is to make him better. RIGHT NOW! You hurt to see your children hurt and hurt evenmore when you cannot immediately make it better for them. This is a process though and God is challenging me to grow in my ability to rely on Him, give Him the control to care for my child and to increase my ability to be patient and be an example in all of these to my family but importantly to my children. I pray every day that Caileigh would see what her brother is going through and realize how important life is and how precious her ability to love and have a family is. I pray that she would learn from me as I FROG (fully rely on God). This is so important to me.

So for now, I am praising my God for bringing Braedon home. Despite a bit of oxygen and some meds, he is happy and getting healthy. I am so thankful that it sin't anything more severe. Sitting in the hospital hearing children crying and parents crying and code alarms going off on the floor was scary and something I never want to directly experience. I am so thankful for my two beautiful children that I have here on earth and looking forward to the day when I get to meet my children in Heaven.

Thank you for any of you that have prayed for my son and for our family.

Sunday, February 21, 2010

Prayers Please

I know I haven't blogged in FOREVER but things have been hard. We are in the hospital, for almost a week now. One week after tomorrow. Braedon came down with a cold and it turned into something unmanagable with his allergies and asthma. We headed to the ER last Tuesday night after he had been vomitting and refusing to eat/drink for three days. High fever, they think just because he was so overrun. They admitted him becuase his oxygen levels were so low. He has been on it almost all week until Friday night when he had a wonderful night. We thought yesterday he was going home, got discharged, packed and were awaiting discharge instructions. All of a sudden his O2 dropped again and had to be put back on. We weren't going home.
Today we are sitting here waiting patiently and honestly I am really being patient. I am ok with whatever God has in store for us and don't want to leave in haste. He is still on some oxygen and I don't mind taking him home on it. I am worried about why he is on it if his lungs are clear and his heart rate is dropping too and they aren't sure what's causing that.
I guess we wll find out sooner or later. Please pray that our doctor today takes the initiative to run some tests to figure things out. Please pray that Braedon's asthma gets under control and we can go home to be a family this week. It's been really hard on Caileigh not being able to have her parents both home and she really misses her brother.

Friday, February 12, 2010

Long Day and it's ponderings

It has been such a long day! Actually, it's been a long week..but that is for a different day. :)
Today I woke up and took Caileigh to school, her sinus infection is atleast under control and she wasn't coughing until she gagged so that is an improvement! I came back and fed Braedon and myself. We got some learning time in and working on his speech before laying him down for a little nap. While he slept I ran around like a chicken with my head cut off calmly gathered our things for the trip to Denver this afternoon, did some laundry and cleaned the kitchen. When all was said and done, Braedon was awake and before dashing to the school to pick up Caileigh, we inhaled some wonderful soup and rice from the local chinese restaurant. LOVE THEM!!

We picked Caileigh up and headed to Denver. I was dreading this trip. We were meeting with Braedon's allergist group, known to shrug their shoulders at his perplexing continuation of symptoms but vague conclusions as to their cause always resulting in walking out the door still "giving his body time" to work through the proposed allergies (that through testings are never there). Today I was ready to fight. I had done some research and was coming prepared. I had insanely documented his diet and apparent pattern of symptoms over the last two months. It is a pattern that seems to last about a week and shows up every two weeks. It's extremely frustrating and heart breaking to watch your child in pain, throwing up, sore all over their bottom from the irritation and patches of eczema in spite of every attempt made to prevent them.

This last month was one of the worst yet. He had blood in his stools, running through him like nothing for a good week. During that time we had about 3 days of vommitting...not fun. He seemed to have trouble swallowing when he would eat and that scares a mom half to death. There has been no change in his diet. His allergy tests come up normal but the doctors are convinced it is proctocolitis....I don't think so.....

A very very dear friend of mine has three beautiful boys. Her middle son is nearly 2 and last year around his first birthday they diagnosed him with EE and EG (both incurable conditions...for now but can be medicated and with the right elimination diet can be controled). The only way to check for these and monitor their progress is through endoscopies and colonoscopies. After talking with her, we agreed the boys symptoms are very much the same or atleast very similar. Obviously there are different severities of these conditions.

Today I approached one of the doctors with this idea. She thinks it is worth looking at, which was totally NOT the answer I expected to hear. I was almost joyful! Joyful because maybe it is a step in coming to an answer. I would rather Braedon was diagnosed with proctocolitis...it can be grown out of over a few years, the other is very rare but is being diagnosed more and more as the research on these conditions becomes more indepth. We have been referred to a doctor at Childrens Hospital in Denver that has dealt with this special condition and is very experienced with it. I am praying he hears me out and gives Braedon the time he deserves to figure out what is ailing him. I don't want to watch him like this anymore but am quite aware that his problems could be so much worse.

Please pray for us, that the doctors are able to see him soon (there is typically a month to two month waiting list) and are open to looking at all options for diagnosis. Please pray that Braedon does not get so bad again, I fear we are heading back into another bad week and Soapy will go back to work Tuesday. Please pray for the P family and their son J as they are desperately trying to find an answer to his med intolerance.

Please also pray for Kate at http://www.prayforkate.com/ She has a brain tumor and is undergoing severe amounts of chemo right now. She is six and her condition is no way related to Braedon's...it is far worse and it is really burdening my heart to pray for her and share her story. She is six years old and from what I have learned as I follow them and pray for her and her family, she and her family are such wonderful, amazing, blessed, God-filled people. Please stop by her page and pray for them and pass it on to others.

Thanks, good night....

Tuesday, February 9, 2010

How Soapy popped "The Question"


So a friend of mine Mama M. came up with this great idea of a week  long recount for Valentines Day. Today is about how your man popped the question! It looks like fun so visit her blog for all the details and to link up with your own story! Enjoy!

Well, poor thing, the story to follow didn't turn out ANY way close to what he had planned. In his defense, he had put a lot of thought into the wonderful moment until....the Navy stepped in.....

Ok, so right before Valentines Day, I rented a duplex (knowing that sometime soon I knew I would not be the only one living there). I had found a replicaj model '67 Camero convertible. Soapy had told me how much he would love one so I bought this model and put it all together and had been working on it for several weeks. Due to drug use by his roommate on base, he had started moving some things over to my place since he spent more time there than he did with his roomie.

He told me that he was taking me to dinner downtown Charleston, SC for Valentines Day. We were not getting to spend much time together at that point because I was finishing my last year of school and he was working shift work. I was totally excited for our date just to spend time with him but I also knew it would be a perfect opportunity for him to ask me to marry him.

I was all ready for our date, he was going to be off watch and picking me up about 7:30....at 8:45 I am getting a call that he still has not left yet. The guy that was supposed to releave his watch had not shown up. At 9:30 he finally was there and was exhausted. He came in and asked me if I even wanted to go or just stay in and watch a movie. We had missed our reservations at one of the most prestigious restaurants in town.

I was internally bummed as I felt that he wasn't going to ask and part of me wanted to just give up but decided to go out anyways. We went downtown to a greek restaurant/pub. Totally NOT romantic in any way, I was in a sweatshirt and jeans if I remember correctly. We ran into some friends as we were leaving and one asked if he was ever going to ask me to marry him and he just laughed.

We went for our walk down the Battery as we always did and walked to the gazebo. This gazebo was a special place for me. It is where my dad re-enlisted each time while he was in the Navy. I had dreamt as a little girl that I would say my vows under it and as a little girl loved to dance around on it like I was a princess. It was nearly midnight and very dark. As we were talking about how I wanted to get married there some day he got down on one knee. He opened a box and there was a ring!!!  A policeman on a side street must have seen what he was doing and started flashing his brites and top lights, it was so sweet. As we walked back down the Battery some kids on the other side of the wall were shooting off fireworks. Someone had put fireworks there just  for  me (haha)!

Later he admitted to how detailed the original plan was. He had made a special menu at the restaurant for me to read as they presented champagne and the ring. It was going to be the most romantic thing he has ever done. Instead, I almost found the ring rolled up in a sweatshirt he left at my place, we went out in jeans and sweatshirts because "we might as well" and then everything turned out perfectly!

Tuesday, February 2, 2010

P90X and The Biggest Loser

Every season I tune in to the Biggest Loser show. My daughter and I make a date out of it each Tuesday night and do jumping jacks, sit ups, stretches and stuff like that while we watch it. We are trying to teach her good health habits now as she is still losing the baby weight but also starting school; kids can be so cruel you know?
This season has been no different. We are all watching the Biggest Loser and tonight put in for the "Pound for Pound Challenge". I am excited and can't wait to see the new me in May! I am pledging to lose another 20 pounds in addition to my weight loss from last year. It will be almost 100 pounds! I can't wait!!!!

To add to my challenge of eating healthy and just "losing weight"...Soapy and I started the P90X workout series yesterday. It kicks your butt, but it feels so good! I actually started last week and this week started over so Soapy and I are on the same week. We are so excited to see how this is going to change and challenge us! We are so excited to see it motivate our daughter to get more active and start learning how to make better choices. We are excited to see how our walk will change and challenge our family and friends and pray that somehow it honors God!

Wish us luck! I will update every week to let everyone know how well this is going and what tips I have learned through the week!