Saturday, November 21, 2009

An Update For Hammer

Hammer, this update is especially for you!!

Hammer(Eric) is a good friend of ours. He works offshore with Mark. They have both been offshore this week. So he knows exactly what is going on here at home. Mark tells him everything. He knows much more than I put on this web page. He knows everything about what is going on with the baby plus when I am in a bad mood, when I chew Mark out, ect. But, he tells Mark to tell me he needs an update. So, here it is.

The baby had an appointment with Dr. Bishop yesterday. We will have an upper barrum swallow Tuesday and another test on Dec 1st. Then the date will be set to put in the g-tube. This will be a 3 to 5 night hospital stay. Finding out that has greatly upset me. We are also changing the way we feed Mackynlee. We will now feed her around the clock every 3 hours. We will increase the amount we give her. This should stretch her tummy. The more it stretches, the more we can feed her and the less times we will have to feed her. (I hope that makes sense.)

As for me, I am exhausted. Everything has caught up with me once again. I hate being on such a tight schedule with the baby. There is always something to do for her. Now feeding her bolus feeds only, the schedule will be tighter and tougher. Life is just very difficult right now. I feel like a prisoner to our house. I come home as quickly as I can after work each evening. If there is anything I need to do, I have to get people to sit with Mackynlee and I am always in such a rush to get back to her before her next feed or meds. I have told Mark when he gets home he is going to be the winner of getting to walk in my shoes for a few days. I have got to be freed from a little stress. I need to sleep late, take a nap, or just whatever I want at the time I want. I know this sounds selfish, but I just need a break from my everyday stressful routine.

Stacy Dixon Creaole, a classmate of ours, lost her father this week. I ask that all keep this family in your prayers.

Father of all mercies and God of consolation, You love us eternally and transform the shadows of death into the dawn of life. Look upon our grief; be our refuge and comfort so that our sadness and sorrow may turn into the light and peace of Your Presence. In dying, Your Son destroyed death; in rising, He restored life. Grant that at the end of our earthly pilgrimage we may be found in His company with our brothers and sisters. There, You shall wipe away every tear. We ask this through Christ our Lord. Amen.

Saturday, November 7, 2009

Well, I know I have not been posting as faithful as I was. Sorry. Ms. Susan Slocum told me this morning how important it was for me to continue letting all know what is going on. I am just very busy, but I am going to set aside time to post at least once or twice a week even if there is no medical news. It is good therapy for me to post and makes me spend more time on devotions, bible reading, and prayer.

Medical Update:
Mackynlee went to the peditrician on Wednesday. He was shocked that she had a feeding tube. She got her 2nd flue shot and rsv shot. We discussed many issues. One thing that he told me is that we were "screwed." Anyone who lives in a rural area that has a child with a complicated medical problem is "screwed." He says due to hospital and ER policy, the local hospitals would not see Mackynlee even for minor issues such as doing an x-ray to make sure her feeding tube is placed correctly. He continued to say this really is a good thing, because if there were other finding to do with her brain or heart, we would be STUCK at a hospital that is incapable of treating such problems. So, if we ever feel she needs to be seen by a doc, he suggests we get in our car and start our 2 hour drive to UMC in Jackson. She is gaining weight now. We have a homehealth nurse that comes and weighs her on Mondays. Last Monday she weighed 13.7!!! The nurse has also ordered a SATS monitor to check Mackynlee's sats on Mondays. She is also checking into getting us PT and OT. Mackynlee is a little behind in her development and our docs want us to get on top of this physical delay. Pray all works out for us to get these services often!!

Shelby is sick with a stomach virus. She has been at my mother-in-laws since Thursday. This is difficult on us. She misses being home and being with us, but we know this is not as difficult as if Mackynlee caught the virus and had to be hospitalized again.

Connor is his silly self!! Mark was just reading a book to him about telling time. He showed Connor how to turn the hands of the clock to 8:30. Connor said, "Daddy, that's not a 30, that's a 6!" He said it in the tone of my daddy does not even know his numbers. HAHA I am planning a pirate birthday party for Connor on November 28th from 1-3. All are invited. If any of you have a cheap idea to make a pirate party cute, let me know. I'm having a treasure hunt, a tattoo table, a pin the flag on the map game, and a pirate dress up and taking each child's pic with a polaroid camera. I'm making picture frames out of construction paper. I am so glad to get excited about this party. For a long time when I thought about his birthday, I would get upset because I did not have the energy or excitement to throw him a party. I want to throw him nice parties because I have always done that for Shelby. I was feeling like I wasn't being a good mom to him, but when Mackynlee started gaining weight, I immediately got the strength and excitement to have him an awsome party!!!

Thanks to Ms. Betty Pittman, my mom, my mother-in-law,and many from our church that provided dinner for us each night this week. I'm not going to name everyone that took part from the young adults from our church because I'm not sure I even know who all sent stuff and help pay for stuff, but I have to mention Ms. Susan Slocum. She made candied apples and a delicious italian cream cheese cake!!! Also, Shelby's GA class from church gave us a bag of fruit. I just peeled an apple for Connor. It was perfect timing and made this first week back at work much more pleasant knowing I did not have to deal with cooking or figuring out dinner plans each night. Special thanks to Tracy and Tanya for giving us a sweet card with money. We are financially okay still, but extended hospital stays can and will put a strain on your finances. Mark and I have always chosen not to use credit cards. If we do not have the money, we do not get what we want. This Christmas will be the same way. Presents are not worth making bills over. We will just down size a bit this year and that is perfectly fine with all of us. Our children do not need anything (along with the majority of children in this day and time). We do not need for anything either. This year during the holidays we will more than ever see the miracles from GOD as our Christmas gifts. "Take time to notice the miracles you are asking for that just might be happening all around you. You might be surprised at what a "miracle" really is! Then remember to give God the glory for it, for it came from no other~ I stole this from another heart mom Ani Karg. Her carepage is thekargfamily. She is an awsome writer and can share her feelings so much more clearly than I. A miracle to me is a normal, tired Monday. Or a Saturday of having to clean the house after a crazy work week. Or trying to get Shelby to learn her spelling words. Life is a miracle. The things we complain about are miracles.

Physically I am feeling great. I have finally caught up on much needed rest that I didn't get when we were in the hospitals. Emotionally I am doing better, but I still have my moments. Thursday when Shelby started getting sick, Mackynlee pulled out her feeding tube, again! I said "God, just speak to me in an audible voice and I will do whatever you are trying to tell me to do. Please stop trying to tell me things through the health and discomfort of my children." But, I soon got over my "feeling sorry for myself and my kids spell." There's just no time for feeling sorry for myself. The most difficult thing for me right now is going places where other moms have their babies that are around Mackynlee's age. I know this is so wrong of me to get upset about this. I know God could have chosen to take my baby. I have to be thankful instead of upset. I also know there are many women out there that cannot have babies and this probably sounds so silly that I would be upset about not carrying Mackynlee out. I have two other kids to do things with, etc. I just want her with us so much, but it is in her best interest for her to stay home. We have decided to keep her home all winter. Sorry in advance for any birthday parties we might miss if we do not have a babysitter for Mackynlee. When Mark is home, we are tag teaming well. Ms. Diane, my mom, and meemaw have all been great at helping out when I need to carry Shelby to gymnastics or she and Connor to church. So many ask what can they do to help. I always say just pray. But, I realized this morning (Mark is leaving for two weeks tomorrow) I could use some help with Mackynlee on Sunday evenings 5:00-6:30 (kids love chior and I love teaching my discipleship training class) on Mondays from 5:30-6:30(Shelby takes gymnastics) and on Wednesdays from 6:30-7:30(kids love going to mission friends and GA's at church). If any of you would like to come hold our miracle during any of these times, please let me know. I will arrange her feeds and meds where all you would have to do is play with her, hold her, and possibly change her diaper. This would be a great help to me emotionally. I do not want Shelby and Connor to have to miss out on the things their are involved in. It will make me feel like I am giving all three of my children everything they need. Once again, our grandma's are helping out wonderfully, but I hate for them to have to miss church all of the time and I do not want to burn them out. I also just thought some of you might want to spend some special time with the miracle all of you have prayed for and conitnue praying for. Food is always welcome here, too. HAHA! Having supper provieded each night this week really spoiled me!!

I also want to thank everyone I work with. So many of my co-workers donated days to me once again. My paycheck has only been docked for $700.00 one time and I have 16 more days to use during this school year when I need to take baby to doc, etc. Several more teachers/friends have told me over and over to let them know if I need more days. This is such peace to know that I have this time to use when needed and my check will not continue to be docked. I worked with wonderful, caring, kind, christian people. Thanks to all of you for supporting me and my family.

Heart Moms: Mackynlee seems to be having a lot of discomfort with gas pains. Do you think it could be any of her meds? What should I do? Call the doc? Malicon drops? It seems to be worse in the wee hours of the morning than any other time of the day.

PLEASE HELP - NEED SOME CARDS! Diana Harrison Biorkman has a 5-yr old son in his last stages of a 2 1/2 year battle with Neuroblastoma cancer. They are celebrating Christmas next weekend and Noah loves Christmas cards. Please take a minute to send a card....PLEASE do it right away!!!!! To : Noah Biorkman, 1141 Fountain View Circle, South Lyon MI 48178. This came from a heart mom's facebook page.

Well, I guess I had more to say than I realized when beginning this post. I hope I haven't bored you. Thanks to all of you for continuing to pray for us. Lift up Meemaw(Ms. Sharon) in your prayers daily. God sent her to us and visa versa. She is such a blessing to our family. Pray for her stregth as she has such a tight schedule to keep Mackynlee on daily while she also sees to the needs of our 3 year old. She is also babysitting Mackynlee tonight so Mark, Connor, and I can go to a young adult party at Tracy and Chad's. She comes every time Mackynlee pulls out her feeding tube and would not have it any other way. We love her so much!! Pray Mackynlee keeps the tube in this time. We have it taped better. We used paper tape instead of that clear stuff!! One last prayer request. I am not giving Mackynlee feeding tube feeds during the day for a few days. This is my decision, not the doctors. Please pray that she will start eating better. I just want her to eat so badly. We except the feeding tube and thank God for it, but we do not want her to stop eating completely. We want her to have the enjoyment of eating (this bothers Meemaw very much).

A Little Girl's Prayer
Author: Helen Roseveare, a doctor missionary from England to Zaire, Africa
Translator: Maria
One night I had worked hard to help a mother in the labor ward; but inspite of all we could do she died leaving us with a tiny premature baby and a crying two-year-old daughter. We would have difficulty keeping the baby alive, as we had no incubator (we had no electricity to run an incubator) and no special feeding facilities.

Although we lived on the equator, nights were often chilly witht reacherous drafts. One student midwife went for the box we had for such babies and the cotton wool the baby would be wrapped in. Another went to stoke up the fire and fill a hot water bottle. She came back shortly in distress to tell me that in filling the bottle, it had burst. Rubber perishes easily in tropical climates.

"And it is our last hot water bottle!" she exclaimed.

As in the West it is no good crying over spilled milk, so in Central Africa it might be considered no good crying over burst water bottles. They do not grow on trees, and there are no drugstores down forest pathways.

"All right," I said, "Put the baby as near the fire as you safely can; sleep between the baby and the door to keep it free from drafts. Your job is to keep the baby warm."

The following noon, as I did most days, I went to have prayers with any of the orphanage children who chose to gather with me. I gave the youngsters various suggestions of things to pray about and told them about the tiny baby. I explained our problem about keeping the baby warm enough, mentioning the hot water bottle. The baby could so easily die if it got chills. I also told them of the two-year-old sister, crying because her mother had died.

During the prayer time, one ten-year-old girl, Ruth, prayed with the usual blunt conciseness of our African children. "Please, God," she prayed,"send us a water bottle. It'll be no good tomorrow, God, as the baby'll be dead, so please send it this afternoon." While I gasped inwardly at the audacity of the prayer, she added by way of corollary, "And while You are about it, would You please send a dolly for the little girl so she'll know You really love her?"

As often with children's prayers, I was put on the spot. Could I honestly say, "Amen"? I just did not believe that God could do this. Oh, yes, I know that He can do everything. The Bible says so. But there are limits, aren't there? The only way God could answer this particular prayer would be by sending me a parcel from the homeland. I had been in Africa for almost four years at that time, and I had never, ever received a parcel from home. Anyway, if anyone did send me a parcel, who would put in a hotwater bottle? I lived on the equator!

Halfway through the afternoon, while I was teaching in the nurses' training school, a message was sent that there was a car at my front door. By the time I reached home, the car had gone, but there, on the verandah, was a large twenty-two pound parcel! I felt tears pricking my eyes. I could not open the parcel alone, so I sent for the orphanage children.Together we pulled off the string, carefully undoing each knot. We folded the paper, taking care not to tear it unduly. Excitement was mounting. Some thirty or forty pairs of eyes were focused on the large cardboard box.

From the top, I lifted out brightly colored, knitted jerseys. Eyes sparkled as I gave them out. Then there were the knitted bandages for the leprosy patients, and the children looked a little bored. Then came a box of mixed raisins and sultanas - that would make a nice batch of buns for the weekend. Then, as I put my hand in again, I felt the... could itreally be? I grasped it and pulled it out - yes! A brand-new, rubberhot water bottle! I cried. I had not asked God to send it; I had not truly believed that He could.

Ruth was in the front row of the children. She rushed forward, crying out, "If God has sent the bottle, He must have sent the dolly, too!"

Rummaging down to the bottom of the box, she pulled out the small, beautifully dressed dolly. Her eyes shone! She had never doubted!

Looking up at me, she asked, "Can I go over with you, Mummy, and give this dolly to that little girl, so she'll know that Jesus really loves her?"

That parcel had been on the way for five whole months! Packed up by my former Sunday school class, whose leader had heard and obeyed God's prompting to send a hot water bottle, even to the equator. And one of the girls had put in a dolly for an African child - five months before - in answer to the believing prayer of a ten-year-old to bring it "that afternoon."

"Before they call, I will answer!"
Isaiah 65:24