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As we begin a new year, so begins a new chapter.
Welcome 2010!
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Since I actually have internet today, I am catching up on over-due post. There is another new one below this one, and I want to make sure everyone reads about the amazing garage sale my sister Jenni hosted for us. And I updated with some summer pictures! The ones at the hotel were taken at the Gaylord Texan. My dad was at a convention there and was nice enough to let us borrow his room key for the day! They had a great Alice in Wonderland Exhibit!
Let's see.... how do I start this one? Things were just too boring around here for Carter. Labs have been amazing, great progress at therapy, and meeting milestones left and right. I guess we needed a little shake-up. So... Carter broke his leg. Gasp! I know. This was our summer. Our summer to lose the O2, walk, talk and eat. Remember? Well, Carter was almost walking. Well, sort of. He had become the cruise the wall Master! If he could hold on, he could get there. It's just been over the last few weeks that he was starting to think about letting go. He would take a few steps as long as he was headed towards something. Everyone told us it was a confidence issue. The Physical therapist was doing amazing things with him, and she said he walked for her everytime. Go figure! But on the Sunday after the garage sale, I guess we had all gotten a little too comfortable with his new found ability, and he was walking around the front yard of Sean's parents with one of his cousins when we think he stepped into a small hole or dip in the yard. He fell to his knees, and that is when the "buckle" fracture happened. He was obviously upset and crying really hard, but we had seen this before where falling had just scared him. We comforted him and put all walking on hold. He was ok as long as you weren't trying to pick him up or move him. But he was visibly in pain if you tried. We thought it was his hip since there was no swelling or bruising, and he really only got upset when you touched his hip. Hip problems can be common for long-term hospital kids, and we have watched his hips very closely. I feel horrible now that we didn't take this more serious, but at the time, I would have never guessed that he broke it.
Before the leg stuff happened, Carter wanted to show off his accessories to his cousins. I had literally just walked away in Jenni's kitchen when all the cousins start yelling "He's leaking!!!!" I think- Oh, God, please don't let it be his ostomy bag. Visions of poop flashed through my head. I ran around the corner and eyed the ostomy bag- no poop, looked intact. I asked the kids, what's leaking? That thing on the floor..... you mean his G-J Tube???? I wanted to cry but could only shake my head. Here we are 2 hours from Dallas on a Saturday afternoon. Seriously? I made a couple of calls to the local hospital... ain't happening. They suggest having the doctor who put it in first replace it. Funny. I don't even think they knew what a G-J Tube was. I went ahead and called Children's in Dallas. The lady in the ER suggested we come right away. Standard, I don't know anything and you will have to wait like the rest of Dallas. I then hung up and called Radiology. The tube has to be place under Fluoroscopy to make sure it's in the Jejenum. A Radiologist has to do that. There is an option on the phone that says "If you are a physician needing to speak with a radiologist, press one". I'm just a few years short of my medical degree, but I can talk the talk, so I press one. I got some radiology resident who was very understanding of my ordeal, but he didn't really have any suggestions. He left me on hold for awhile and still came back with no real answers. When he began to stutter and obviously didn't know what to say... I stepped in- " So let's walk through this- I drive 2 hours back to Dallas, wait in the ER for another 4, finally get a resident to stop talking about my little medical miracle and agree to replace the tube, only to find out you have left for the evening, so they will admit me and of course there won't be any beds on GI, so we'll have to stay in the germ filled ER only to have them tell me it will probably be Monday before a Radiologist can replace the tube!" Right? Yes Ma'am. I thank him for his time and tell him I'll see him Monday. Whew- did you get all that? Anywho, by the time all that nightmare was over, I went back in the family room to find that Sean had replaced the tube and all had returned to happyland. I still can't believe Sean replaced it and don't even bother sending me emails about how we aren't supposed to do that. Tough times, call for tough decisions. Done.
We came home on Monday and made appts to have the tube placement checked and get an x-ray of Carter's leg just to be safe. Low and behold, while we are waiting, the rad tech comes out and tells us we need to go over to the ER. That's where we get the news that there is small buckle fracture.It's a small hairline fracture right on the edge of the femur directly above the knee. They tell us they see this a lot with toddlers learning to walk. The ortho guy describes it as if you have bent a coke can in the middle. It doesn't break, it just hurts the integrity of the can. This is where the funny stuff starts. I see the ortho guy and the nurse looking at Carter and mapping him out. He takes a deep breathe and tells me they usually do a full body cast for fractures like this. Wait, I thought we were talking about a coke can? FULL BODY CAST???? I start to laugh. Yeah, not gonna happen. What else you got? He is shaking his head and looks at the nurse. That's when the nurse says "do you need access to all "this" everyday?" Meaning- Carter's G Tube and his ostomy bag. Maybe some of you don't know what the ostomy bag is for and don't feel comfortable asking, so I will share. The end of Carter's small bowel empties into that bag. Carter still has a colon and hopefully someday we will be able to reconnect his small bowel to his colon and he will be able to use the bathroom just like you and me. So back to the nurse.... I just looked up and smiled and said yes. I want you to be proud of me.... there were so many comebacks running through my head, but I was a grownup and only replied. I will do the same here and refrain. But seriously?? Ok, nevermind. They agree they will have to do only a leg cast and we are warned that it could slip off and have to be redone. We agree, get the glowing green cast and gather our belongings. Long day!!
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As usual, I am a week (or two) late in posting something I really want to share with you. During all the craziness of the air conditioner chaos, I was also planning a garage with Sean's sister, Jenni. We aren't allowed to have garage sales in our neighborhood and in recent years, we have always gone to Waco so we can spend time with Sean's family and have a sale! I had ask his sister several weeks ago if she wouldn't mind if we borrowed her driveway and as always, she said yes. So I had been digging thru closets, cleaning drawers and collecting our "goodies to go". I had quite a bit. But little did I know what Miss Jenni had been planning. She never ceases to amaze me in her creative ideas and her energy!!! She had emailed and called all her friends about donating their stuff for the sale. She had decided to take the sale to next level!!! Overall, 12 families in addition to Sean's family donated an entire garage full of stuff!!! Unbelievable!! As if that wasn't enough, Jenni also had a write up about Carter and this fundraiser in the Waco Herald. Several people bought 25 cent items and paid with a $5 and told us to keep the change. One man even just stopped by and gave $20. One lady asked me, "Is that your baby?" It was 7 am and there were no babies around, I just thought she hadn't had her coffee. I said, I'm sorry, what baby? She said the baby in the newspaper. I knew Jenni had done something!! We are so blessed to have family who never stops thinking of us and takes time away from their own family to help us. I just wanted to clean out our closets and hopefully make a couple of bucks in the process. Little did I know the amount of love and giving we would be shown by Jenni and all her friends. A HUGE thank you to everyone who donated for the garage sale. It was a great success!!! We continue to be blessed by people we don't even know. A huge thank you to Jenni who worked so hard to get everything ready and get up at the crack of dawn. A another huge thank you to Sean's mom, Yolanda, who got change for us and was there at 5 o'clock in the morning to help. Thank you again. We are very lucky to have such a caring family.
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When trying to organize my thoughts for this post, I am completely overwhelmed. Where do I begin? I want to share all the amazing blessings we have recieved this past week. Let's start with last saturday, when it began to feel hot in our house. By nightfall, the temp in our home had reached the high 80's. The unthinkable was happening and around 11 pm. I heard the air conditioner take one last breath. Our AC went out. Thoughts of what in world we were going to do raced through my mind. How are we going to fix this? How many more weeks of summer do we have? How many more days of 100 degrees? Can we live in the heat with only a fan? I don't think Sean or I got any sleep that night. Carter's room remained cool, thank GOD! The next day I called the one person I knew might have a few answers and always makes me feel better, my sister-in-law, Jenni. Her husband has experience in AC and I was curious if we might be able to find a used unit and how AC units were installed. Next thing I know, Jenni & Randy are on their way to Dallas from Waco with a portable AC. In the meantime, Carter and I hit the kiddy pool in the front yard! It was quite the site and let's just say thank goodness the HOA office is closed on Sunday. Sean continued to work inside trying to restart the unit and do anything to cool the house. Jenni & Randy arrived and just seeing their faces made me feel better. We got the portable AC set up in our bedroom and waited, while the temp in the house got all the way to 94. It was hot. I knew then we could not keep Carter in that heat. He had already started wheezing. We spent a couple of hours at Wal-Mart & Target. We went to Home Depot just to see what new units cost and just as we walked in the door, the Trane salesgal said, "Are you having any heating and cooling issues?" I laughed outloud and told Sean just to keep walking before I started to cry. They actually don't sell units at Home Depot, so we left to get some dinner. We stayed at Jason's deli until 9 when Carter had to get his meds. When we got home, the bedroom was cooler but the house had just gotten so hot. There was no way we could stay and decided to go to a hotel. It was so cold in that hotel room, but I didn't touch the thermostat!!!! No one complained about how cold it was!! Funny.
The next morning, we decided to skip labs and just go to therapy. We called an AC company our neighbor had used. She told Sean she didn't have any appts until Wed. Sean told her we had stayed in the hotel and couldn't wait until wednesday and would have to call someone else. She said they would figure it out and work us in asap. One of the first signs that help was on the way. Mrs. Crow sent her son, Josh to our aide and he acutally beat us to the house. Josh was amazing. He was able to get the unit running again!! He told Sean he had no idea how long it would last, but call him back when it stopped again. Sean was very impressed with Josh and noticed that Josh walked with a limp and showed signs of CP or a stroke. Sean being Sean ask and Josh said he had a major stroke with he was 10 yrs old. I arrived back home from therapy to find a running AC. YEA!! Of course, it wasn't cool yet, but hope was beginning.
One important part I need to mention was that when I called my sister Jenni, I swore her to not tell anyone about the AC. Our families have been through so much with us and I just didn't want everyone worried. I THOUGHT I could trust her..... smile!
PART 2
On Tuesday morning, we were getting Carter ready to go to therapy when my phone rang. It was Jenni. She didn't even say hello... she said "don't be mad". I said what did you do? She said she had told my other sister Jackie and they might have an idea. Not set in stone, but an idea. Jackie's husband James was going to call us and tell us. I let Sean talk to James since I was headed to get Carter's labs. I see Sean shaking his head and hardly able to speak. He tells me that James had emailed a local Dallas celebrity and his assistant had emailed back asking for more info. We get an email from the assistant asking for a quote for a new AC unit. We are dumbfounded and can't believe this was happening. We laughed that "sure we would play along" and send the quote with no real expectations. I called the owner of CROW Heating and AC and spoke with Mrs. Kim Crow. I told her there was a crazy chance that we might be able to get a new unit and I just needed a written quote. Just as I was talking to her, my phone cut out. I apologize and told her I was at the hospital and the reception is bad inside. I didn't think anything of telling her that because being at the hospital is normal for us. She immediately said, "are you ok, why are you at the hospital?". I blow it off and say "oh it's nothing, my son gets regular labs every week." Mrs. Crow said, "what's wrong with your son?" Smile. Thinking of how many minutes I have on my cell phone plan, I give her the short version. I can hear she is overcome with emotion and she says to me- "if this person buys your AC coil & condenser, I am going to donate a new furnace and all the labor at no cost." I began to sob. I could hardly speak. I began to argue with her and tell her we don't need a new furnace, but she pulls the I'm not asking, I'm telling and it's not up for discussion card. I do my best to accept and compose myself. I hung up and forwarded the quote she faxed to me to the assistant. We finished Carter's labs and headed to therapy. We didn't get any calls back, so we tried hard not to get our hopes up. Then, after lunch, Mrs. Crow called and ask what time they could get in to install the new AC/Furnace. I thought maybe she had misunderstood. We couldn't afford the new unit if this individual couldn't help. She said that the assistant called about 10 minutes after we had spoke that morning and paid for the new AC in full. She was still donating the furnace and they wanted to come asap. I have no words to describe the emotion I felt. Absolutely no words. How could someone who doesn't know us do this?
Through my crying, I tell Mrs. Crow, I just can't accept this. She begins to tell me about her son, Josh. And his stroke and the hard times and how people came to their assistance. She tells me the power of letting people be part of our miracle and how someday, I will have the chance to "pay it forward", but today was my day to let my pride down and allow people to love us. She is crying, I am crying. Who knows how we got through this conversation. Mrs. Crow also tells me about how her husband died of lung cancer last year and the legacy he left with their family business. She told me, he wouldv'e donated the furnace and to continue his commitment to quality, she would honor him by doing the same. Amazing people we had never even heard of 2 days prior.
I am sure some of you are wondering who would do this for us? He asked that we not call the news, no public publicity, but our site is only filled with each of you and you are our family. So I want to take this opportunity to thank Mr. Mark Cuban, the owner of the Dallas Mavericks for his unbelievable gift to my family. The gift of air conditioning. If you live in Texas, you know how huge this gift this. Mr. Cuban has been generous to us before. He sent us 4 tickets to a Mavericks game after we returned from Boston. My mom simply sent him the news story and Carter's website and of course, told him of our love for the Mavericks. Mr. Cuban is a HUGE part of our community and apparently does random acts of Kindness all the time. We cannot thank him enough. In addition to Mr. Mark Cuban, a huge thank you to Kim Crow, Josh Crow & CROW Air conditioning. If you need a company who cares and have heating cooling needs, please call Kim. She is amazing. I also want to tell Jenni & Randy, James & Jackie that without their love and concern, none of this would have happened. Jenni- you have a big beautiful mouth! James- you should probably have your head checked- who would email Mark Cuban??? You would. You may be big & tough, but your heart is so filled with love. We love you. What would we do without you guys? THANK YOU with all our being. Thank you.....
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Gosh, June 26 was my last post. As always, I am feeling guilty that I haven't been on to update. I have been living this weird, good, bad, awesome, new, strange and "hard to process" life lately. I have probably already confused you.
Since my last post, I was going non-stop to get ready for Carter's Birthday Party. We had such an amazing time and once again blessed to be surrounded with friends and family whose love and support is never far. I think Carter had a good time. He got to swim and open presents. I think his favorite part was the Happy Birthday Singing! Before the song was over, he was signing for "more more". It's a little thing to ask, so we sang again! I'm sure everyone would have sang all day to keep seeing that smile. He had picked out an Elmo cake and even though we didn't blow out any candles, he really liked it. I will finish uploading the pictures this weekend, but a HUGE thank you goes out to our friends, the Mehtas. Manish is a professional photographer and lucky for us... he brought his camera!!! Here is the link to the photos he took. And if you are looking for an incredible wedding photographer... call him... he is Amazing!!! Not to mention has the most wonderful wife and 3 adorable triplet sons!!!!Thank you so much!!!
http://www.veritaz.com/three/images/2010/carter/
So after the party, I had a little "party-planning blues". You know when you plan and plan and then it's over and you don't have anything to plan. But we have plenty of things to fill the void. Carter has therapy at Baylor 4 times a week. He'll probably need psychotherapy to work through the fact that he had to go therapy so much as a child. Funny. I think we have finally found the keys to unlock all the pieces. Carter has the most amazing PT gal and has been taking a few steps on his own over the past couple of days. He is even tackling stairs when given the chance. It should no time before he is running around! I hope so... I have so longed for this day! We have 2 incredible Verbal speech and Feeding gals! Carter is babbling all the time and we have started feeding him by mouth again. I have a new feeding plan I am working on for him. I will do that in another post. The OT gal is ok, but we are seeing progress and that is all that matters. Carter is doing OT to work on his fine motor skills... holding crayons, grabing small objects etc. So with trips to therapy almost everyday, my schedule is full.
Which leads me to our next hurdle. Many of you have been asking and we have been avoiding answering, but Sean did not recieve an order from either of the positions he has spent the past 3 months interviewing for. It is a huge disappointment and I can only speak for myself and say "why God?" Why are our prayers going unanswered? What are we supposed to do? If it were not for the unbelievable generosity of our family and friends, we would have already lost our house, everything. What are we supposed to do? Sean can't be looking 24 hours a day and most days there is nothing new for him to apply for. Some of you may be wondering why he doesn't go work at Home Depot or something like that... if he were to do that, we would lose our Cobra Insurance coverage. Having private insurance is a must for Carter. We can never lose that coverage or his transplant and everything related to it will be considered a pre-existing condition and not covered. I know with all the new obamacare junk, they say that isn't the case, but it's not worth the risk. And, I don't know if Sean's mental health could handle it. Both of our depression grows as we sink further and further into financial disaster. I am trying so hard to keep praying and looking for God's plan in all this, but my Faith is tired and it's hard to keep my head above water....
Until he smiles at me and it all goes away.... Carter has the power to pull me from the darkest of despair to ear to ear smiles. These past few weeks have been the best of my life. Seeing him cruise from room to room, watching him play pretend with his toys, listening to him tell me about whatever the heck he is babbling. These are days I have longed for. Normal days. Days when I get up before he does and I do motherly things. I pick up toys, do a load of laundry and pick out his clothes for the day. My wonderful friend and neighbor said to me the other day that I need to have success as a mom. That everything had been taken away from me and I needed to learn how to feel like real mom. She couldn't have been more right. I am learning and working hard everyday to become the mom I want to be, not the mom of a sick kid, but Carter's mom. There is a big difference. I am learning how to manage a house, plan the schedule to make sure we don't miss a minute of fun. For the first time since Carter was born, I feel like his mom. Not his mother, not the person who is responsible for signing treatment concents, but his mommy. I have never been so tired in my life, but it feels really good. So good.
Which leads to my last thoughts. Underneath all these great days, lies lots of sadness and guilt. Because while we are loving each summer day, many of our friends are facing decisions and days I pray never come to our door. We have several friends who might lose their children this summer. We know some who have already said goodbye to their child. One of the reasons, I just haven't been able to post on the site is because, I feel bad. I don't want to boast about our great summer when people we love are hurting. Salt in the wound, if you will. I know when we had our darkest days, it was so good to read of others doing well and it gave me something to look forward to. But on this side, I don't know. I am working through this and trying to understand that each of us has our own road and our own cross to bear. Some heavier than others. I am once again going to ask for your prayers for several of our wonderful friends who are making very difficult decisions....
Emerson White- www.cotaforemersonw.com
Ashley Adams- http://ashleyadamsjournal.blogspot.com/
Jennifer Sparks- http://www.caringbridge.org/visit/jennifersparks
Eithiene Hilliard- http://www.caringbridge.org/visit/eithenerosehilliard
Cooper Knight- http://www.cotaforcooperk.com
Joella Niskar- Joella doesn't have a site, but you can leave comments here
I know I can count on each of you to lift these and other families up. They need every prayer and positive thought. We love these children and their families.
I have lots of summer photos I need to upload. I think the best way for you to see all 27,000 of them will be to add them to a photo site. I will work on that over the weekend!!! Thank you for hanging in there with us. We love you....
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Well, another week has come and gone. Where does time go? it's almost July!!! Crazy. We had labs on monday which showed that Carter's Mag level is good and stable. We haven't had to have any Mag infusions for over a week! On Tuesday, we went to see the Eye doctor to decide what to do about Carter's stabimus. Needless to say, I do take for granted how wonderful our regular doctors take care of us. We were there for 4 hours. Yes, 4 hours, but it was worth the whole 3 minutes we got to see the doctor! If I hadn't heard from lots of other moms that he is the guy to see, we would have left. So, about a minute and a half in, Sean and I just told him we want Carter to have the surgery. I know several of you have sent me emails voicing your concern. But here is our reasoning- The option before surgery is glasses. There is no guarantee that they will work and several docs have said they really don't think it will even help in Carter's case. So we would spend 6 months in glasses and then have to have the surgery anyway. The other reason is I feel that Carter already has enough "accessories". He currently has a PICC line, a G-J Tube, and an ostomy. All of which we have to watch like a hawk. At the first sign that he might not get his way, he is grabbing and pulling on something he isn't supposed to. This may be a selfish thing, but there is no way I can fight with him all day to wear glasses. He will only keep his sunglasses on if he is in direct sun. A couple of moms have said that if he realized that the glasses help, he will be more willing to wear them. That's probably true. But the surgery takes 15 minutes. So for 15 minutes, I can fix his eyes, avoid glasses, save time if the glasses didn't work and avoid multiple arguments a day. I know many of you have said, but he has already been through so much, exactly why I think it's worth 15 minutes to fix this problem and move on. Hopefully we will able to schedule this in the next week or so. We have already talked to our Anthesiologist and she will oversee the surgery to make sure everything goes smoothly. I will update with the date and details. On Wednesday, Carter had a repeat Chest CT to see if the lung abcess was still there. The great news is the abcess is gone!!! The pneumonia is completely cleared and we only see the damage we knew was there from his chronic lung disease. We have been able to wean his Oxygen and hopefully will continue to work towards getting off completely this summer. So with that good news... brings even better news... we will no longer need the PICC line!!!! Right now, the plan is to do labs on Monday, check his IGG level to see if he should get IVIG before we pull the line and then make a plan to pull the line!!! It means so much! Our summer can officially begin!! Lots of swimming and outdoor stuff we just couldn't risk with the line! I am so excited and praying everything will follow my plan!! We also finally got therapy appts scheduled! We are going to start PT this week and add on the 3 additional disciplines as he tolerates it. Right now they want us to have 2 OT sessions, 2 PT sessions, 2 speech sessions and 2 feeding sessions. Yep- 8 appts a week and all in four days. Gonna get interesting! I have already started increasing my Red Bull intake in preparation!!
so, I think that gets us to today. We are enjoying a low key Saturday today. Nice and quiet, not getting much done, but we need a rest day! On Sean's job front, his third interview with company #1 went well. They asked this week for the information to verify his licenses, so that is good. With company #2, he is waiting to get the second interview scheduled. Neither of these positions are moving quickly. That is pretty common in his field. I know Sean is ready to have an offer and make some decisions, but all in good time! Thanks for your prayers and support. I hope each of you has a great weekend!!
I also wanted to let you know I have scheduled Carter's Birthday Party for July 18th. We are gonna do a swim party and I will have the invites mailed out next week. Hope to see everyone there!!!! As you can see, we have begun Birthday Party Stuff shopping.... we didn't get the glasses!!!
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