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.
Monday, June 7, 2010
Wednesday, June 2, 2010
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.*****
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.*****
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!
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 in.....it'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. :)
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 in.....it'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.
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 patient....today 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.
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.
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