Not Me Monday!--almost too late :)

We have been going and going today. We started Caileigh's swimming lessons and I taught dance, cleaned in between and played outside! It's been so busy!! But I thought I would put a few things together for MckMama's Not Me Monday. The idea is you get to confess whatever embarassing, frustrating or just dim whitted things you have done over the last week and get it off your chest! This week she is giving away a special prize! Head on over and check it out and hop in soon!

So this past week I did not take my children to the doctors for what was supposed to be a simple appointment for Caileigh only to find out she's allergic to the sun and Braedon has a double ear infection. While at said appointment, I definitely did not get thrown up on by Braedon and then wipe out the inside of my bra and clothes with baby wipes just to make it home. I did not treat this as though it was a normal occurance because my son never throws up on a regular basis all over me. I did not tell the nurses that it was ok, I have one of those wonderful plastic puke buckets in my car complete with towels if needed on the way home.

I did not wake up one morning to find Braedon outside running around pantsless in the backyard. I always make sure he is safe and secured in his crib and would never sleep through him crawling out and walking out of our room to go play by himself.

I would never crawl through the front window after locking my keys in the house. I always make sure they are in my pocket before closing the door.

I most certainly did not look at Braedon the other day and ask him to please take the waterfall rocks out of his mouth and tell him "Son, please put those back. I told you yesterday these are not for eating,they are for watching". Apparentl watching rocks in water is not fun for a 19 month old!

Happy Not Me Monday!!

Quick Post with GREAT news!!!

I can't stay long, Caileigh starts swimming lessons today! Just wanted to leave a quick note letting everyone know that we got test results for Braedon back.

He does NOT NOT, let me repeat, NOOOOT have Cystic Fibrosis or the Mitocondria Disorder!!!!! PRAISE GOD! I am so relieved these tests were normal and we don't have to worry about them anymore. We still don't know what he has or any ideas of what to do next. We will meet with his team of doctors on July 23, unless a cancellation comes up before then.

The last two weeks he has been so much better than the last few months! Braedon went to the doctor Friday for a fever, found out it's a double ear infection  but we found out he is 26.1 pounds! He has gained all the weight back plus a pound since May 7th. That is amazing and exciting! We are so thankful and amazed that God is allowing him to feel better, have more energy and being able to live like a normal 18 month old.

We are praying for ultimate healing and that God will show us what His will is and direction through all of it. We are praying that somewhere along the way a test can be done to determine why he has this problem and how to fix it. We are looking forward to not having to worry about when he will have another episode.

Well, I have run! Wish us luck!! Caileigh is not a fan of putting her face in water so today may be a bit interesting to say the least. :)

Great Day!

Have you ever sat at the end of the day, when the kids are in bed and asleep and thought, "I can do this! I may finally be getting the hang of this parenting thing!"...well that is where I am right now. I am too excited to go to bed so I am blogging. :)

Braedon has been doing much better the last 10 days or so. We have gone without a major episode. He has had some GI cramping I think (pain and swollen abdomen, fussiness) but know violent vomiting or mini seizure-like episodes for almost 2 weeks! I am so excited!!! It's been nice to be able to have a somewhat normal life! We are still waiting for test results for the cystic fibrosis and the genetic tests. They said 4 weeks on the CF so that puts us at 2 weeks out. The others should start trickling in any day now. I am going to put calls into the labs to see if anything has come back yet and to make sure the results are being sent to the right doctors.

Today Caileigh, Braedon and I headed to my old high school parking lot to practice riding bikes. Caileigh is to say petrified of riding her bike would be an understatement. She loves the idea and really wants to ride but she is a very cautious child. I decided since Braedon is doing so well this past week GI related, I have the time, energy and attention span to help her. The school lot is flat (which is impressive in Colorado) and it's warm (which is also impressive for CO as most of the year the bike has sat in the garage due to cold, snow and hills).

She was nervous at first but after a few minutes was pumping up and down the parking lot. We had a few problems with the training wheels turning and stuff so we ended our practice time early. She was a champ though! She would get off and fix it and hop right back on and take off (if you know my daughter, you know this is totally out of character for her and she would rather watch grass grow than to try something that intimidates her).

Our goal for the summer???......GET THE TRAINING WHEELS OFF!!!! Caileigh is a very tall almost 6 year old. With that comes a heavier than average almost 6 year old. Part of the complications I would imagine come from her weight exceeding the maximum capacity for the training wheels. Our goal is to have her riding without them be end of summer.

The best part though, aside from seeing her smile, trusting me and having fun, was her coming home and while in the bathtub, said, "Mom, I had a really great day today. Thanks for helping me, it sure was fun!" For those of you who know my daughter you know what a step that was. For those of you who don't, she does not trust anyone for any reason. She wants to and it breaks her heart that she doesn't. She is very cautious and has always had a somewhat panic-type personality about trying new things (unless she is away from us and with friends and then she seems to branch out a bit). I was SO proud of her today!

I took some video and pictures of her so I will post them tomorrow. I need to get some sleep so I can function, I promised to take them to the Cheyenne Mtn Zoo in the morning. Should be loads of fun, you can feed the giraffes right from your hand.

Also, thank you to any of you that have been praying for us. I definitely feel the peace lately. I am working hard on my time with God and letting Him take control of our lives and the outcome for Braedon. It is not easy to let go of your child and acknowledge you can't control their fate but I am getting better. Also, two weeks ago Soapy was able to catch a bid on another crew for work. They are in the same place as his old crew and he is doing the same job but this foreman is infinitely times better than the last. Soapy has more enjoyed (as much as possible) going to work than regretted having to spend time with these groups of guys. I am so thankful for that answer to prayer while we search for a local position of some sort.

Encouraged

I am so excited and encouraged and wanted to share with y'all what is happening that is making me that way.

In the last three weeks I have been noticing some changes in Braedon. His GI stuff is still occurring but on a much less frequent cycle and I believe that to be a little bit from the medications they have him on for digestion and a lot from prayer from so many people! His energy has picked up and he is active from dawn to dusk! As a parent of a chronically sick child, I much prefer the go-go activity to the listlessness that was his daily life this time last month. I can't believe how far he has come in a mere 4 weeks!

Other things I have noticed changing in our youngest is his balance and mental advances. He is much more sure footed lately and is picking up speed chasing his sister around the house. He has also added a large (for him and all things considered) list of vocabulary and sounds to his repertoire. He can now make the sounds of most zoo and farm animals (before he went into the hospital the beginning of May he could bark and meow and that was it!), he can say "ish, Nana, papa, started saying Dada again, drink, cereal, juice, Elmo". Before the beginning of May he said, "mama, da (dog), ba (ball), ou (out)". I can't believe how his vocabulary has just taken off!! I am wondering if his body was just deprived of so many nutrients since he wasn't digesting anything and was lacking what he needed for his brain to function. It's is so great to see the excitement on his face when he uses a new word and we make such a big deal out of it. He is noticeably less frustrated in his communication than he was a month ago.

Three days ago, he started really pulling on his diaper and getting upset when he was wet or dirty. Once, Caileigh came running to tell us he took off his shorts and diaper because it was wet. We brought out Caileigh's old training potty. He has gone in a few times each day just to sit on it, especially if I go in to go to the bathroom. Yesterday, by chance, he actually was sitting there when he went! He was so excited. So we now have Smarties as treats for going to the bathroom. :) I am hesitant to start potty training with his current issues but if he's ready, why not start? So wish us luck and anybody out there with training advice for a Mommy with her first boy......I will take all I can get!

More Tests today!

We went to the Childrens Hospital (it's actually a wing of a main hospital here in the Springs but is partnered with Denver Childrens) today for more bloodwork. We sent Caileigh to VBS with my Mom (who volunteered so we could get a discount for registration, THANK YOU MOM), Soapy and I headed to the hospital with Braedon.

Do any of you have those mornings where your child(ren) are just being exceptionally happy and good? You wonder when is it going to unravel and pray that it never ends?? Well, that was our day today. Braedon was all smiles and giggles all morning. He waved at everyone as we walked to the outpatient lab and was so pleasant and well mannered. I hated to take him in so they could stick him, I knew it was going to make his mood turn south.

Well, it took three of us to hold him down but they were able to get it in the first few seconds and soon after that the blood draw was over! I was surprised by the small amount they drew but she assured me it was enough for the tests so we said our thank yous and goodbyes and headed out the door. Braedon was understandably upset....that was until we saw a therapy dog on our way out and he got to pet the dog and then ride the rest of the way out in a wagon (he loves the wagons). The boys dropped me off to teach dance and then picked me up, upon arrival Braedon was asleep.

We got home and I noticed we had a message on the home phone so I played it. "Mrs Martin, this is D from the Outpatient Lab. I need to talk to you right away. Please call me immediately."  --Not the kind of message I was hoping for but I called her back: "It seems when we printed the faxed lab orders from Denver that only 3 of 10 pages printed. We need you to come back as soon as possible so we can draw the rest and get it sent with the draw from this morning." 

Not what I wanted to hear. By this time, Soapy was packing for work, my mom and Caileigh had just gotten home and we were preparing to go get lunch so that later today we could play in the kiddie pool I had set up this morning. Instead we had lunch, said our goodbyes to Daddy and headed for the hospital...again. Braedon was still in such a wonderful mood, I was dreading this second trip.

Sure enough, we needed 6 more tubes of blood and I had the priviledge of holding him myself. :( Not a happy Mama. We left with handfuls of stickers as the nurses felt so bad and then felt worse once Braedon waved bye and blew them kisses (that mandated atleast 5 more stickers). His mood however had turned and not in a good way. He never recovered and to say I was glad to put him in his crib is an extreme understatement.

All in all, they tested for Cystic Fibrosis (this time as a blood draw so it will take 4 weeks for results, the sweat test is within 24 hrs but I had no desire to do that again and have it not work a second time), several immunoglobulin disorders and a few more autoimmune disorders as well. We still don't have results back on all the genetic tests yet but I don't really expect anything for another 4 weeks atleast. It is a long process but a necessary process none the less.

Please continue to be in prayer for these tests and the ones we are waiting for already. We have his 24 hr EEG scheduled for the end of July unless they have a cancellation. This past week he has been doing much better GI wise and I can't recall a starring episode this past week but his sleep has been very restless and at times the GI stuff looks as though we may be heading into another episode but so far so good. We are so thankful for that.

Thank you everyone who is reading this and praying for our son and our entire family. We so appreciate all the prayers, tips and words of encouragement that we are getting. It helps get me through some of the time when Soapy is away. Eventhough my parents are here all the time, it is hard as the parents to be apart when your child needs both of you there.

Much deserved, and belated pictures

Here are some very belated pictures from a photo session with had with Jennifer McKinney when she and Israel came to Colorado Springs for Focus On The Family's Focus on Marriage conference in February. I was so excited to be able to get these pictures done, even if I did have to sacrifice both anniversary and birthday dates to get them! It was worth it, there were so many pictures and they were all so good. We made some good friends in the process and have memories to treasure forever.

ENJOY!

This was one of our family pictures on the steps of the castle. Caileigh was so upset we were taking her to a castle for pictures and not letting her wear a dress. She was so worried she would run into a real princess and not be properly dressed....yes a girly girl and she's all mine!

I love this one just because I'm the Mama and if I had it my way I would love to keep him like this for a while. He is such a sweet, precious little boy who loves his Mama very much. Don't be fooled though, sweet/precious do NOT exclude him from being a handful/over active and ALL boy!

I love this one of Caileigh blowing snow. We had so much fun with this picture. It wasn't that cold, it was in the 40's but had snowed the night before. She picked up a handful and started blowing it all over.

We had just gotten to the Castle, Braedon had just woken up and I took the oxygen sticky tabs off his face (FYI, don't just pull them off, it takes off skin thus leaving you with sores on their face and a very upset little boy)

I loved this one, Caileigh played peek-a-boo with Jennifer and they turned out great.

What can I say? I just love his eyes and he can be so sensitive when he wants to be.

Well, that is it for now. I will post more later but I am going to bed. I was able to put Braedon back to bed in between posts and I am going to hit the bed before he wakes up again! Good night everyone and God Bless!

Stream of Consciousness

I feel horrible for not updating sooner. We have had a very busy three weeks. After getting Braedon out of the hospital, my sister came out to visit for a week to help out. She left and the next week my mother in law, sister in law and brother in law came to visit for a week. This past week my uncle came out to visit. We have been blessed with the ability to spend so much time with family lately and the wonderful help that they bring.

The medicinal cocktail they have Braedon on seems to be helping a bit. They have put him on probiotics and zinc to help with his appetite and some of the stomach discomfort. He is on some respiratory medicines to help the asthma and nasal secretions. He is on some antibiotics that, in this weaker concentration, are used to promote digestion. All of these, while expensive, are actually helping. Instead of the daily vomit and diarrhea routine we were experiencing, it is much more tame. We have two really bad days a week where he just suddenly starts throwing up and will every 20 minutes for about 5 hours, during that time the bowls get worse and they persist for about 48 hours. He gets very week and just sleeps in my arms until his body starts to heal and he wakes up with more pep. He has gained back about a pound and a half since the 11th of May. We are grateful for that, he is nearly at the same weight he was last June and even though he has always been  a good six months ahead in his clothes size, he is now sporting 12-18 month clothing (he actually fits 9mos shorts best around the waist, 12 months are now even too big). We bought him 12 mos clothes last June for our vacation to Charleston. I am trying to not freak out about that and be patient and let the medicines help to encourage him to eat.

I am rejoicing in the fact that my husband met with his VA counselor today. She helped him with his resume and said she believed she could help him find a new job that would offer great benefits fairly soon and easily. I am praying for this; I need him home, our kids need him home.

Braedon has also added some new vocabulary this week and I am praying it sticks this time. He has a habit of adding new words or sounds and then loses them just as quickly. He can now ribbit like a frog, he started saying "DADA" which he hasn't said since he was about 7 months old. He still barks and meows and I think he tried to say "sissy" and crow like a rooster today. If I can remember I will try and record him imitating a frog and post it soon.

Tomorrow we leave for Denver again for more blood work. The sweat test they did last week didn't collect enough sweat for the test. If anyone is ever faced with having to do this for your child, save yourself the trouble and torture of your child afraid and screaming, just get the blood test; they will do it anyways if you have a positive sweat test. We are going to do the blood test for Cystic Fibrosis tomorrow and a whole gamut of tests for antibody allergies that would coincide with the autoimmune disorders they are testing for. I don't know how long those take to get back, I am hoping not long.

Caileigh is out of school now, has been for almost two weeks. She is getting bored already, not that she has told me or that the action packed adventures our family members have taken her on hasn't been enough but I can tell she isn't being mentally stimulated anymore. Time to break out the crafts and workbooks I bought just for the summer!

We are having a garage sale this weekend to get rid of things we don't need or can live without for now. We are taking all the money and paying off some debt. Braedon's health stuff is starting to get up there in $$ and I am concerned it may get worse before it gets better. We are talking of relocating to a few different locations as we figure out what Braedon's problems are. We don't want to have debt to hang over us along with the financial burden of a sick child. A friend of my husband, his wife does medical billing from home; I am looking into it. It may be an option for now until I can have the time to pursue photography or Mary Kay. Neither is working for me right now, I just can't plan on being anywhere when I am not sure Braedon will be well.

Please pray for us that God shows us where He wants us to be and what He wants us to be doing. Please pray God provides us with conclusive test results so we can begin to move forward. Please pray I can get some sleep tonight; Braedon has already been up twice crying in pain and I have typed most of this while holding him asleep in my arms at one point or another.

*****Thank you to everyone praying for us and for loving on my son from a distance. It means so much to me to know there are other prayer "warriors" out there petitioning on his behalf while I hold him.*****