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Thursday, December 23, 2004 08:07 PM MST
Well, it wasn't a one time thing...Lauren continued to eat today as well. Her diet may be french fries and candy for the next couple of weeks, but that is just fine. Daddy might find himself frequenting the McDonald's drive-thru at breakfast, lunch and dinner for the next week for their world famous french fries...yum. That is the least that daddy can do. She did get adventurous today as she ate saltines covered with soft margarine. Not my favorite...but whatever she'll eat, right?
We finally found a home in Gilbert last night (actually, Lynette found it for us and called us to describe it). It is located at Lindsay and Warner. We take possession of it on Tuesday, December 27th. Brian will move our belongings on Wednesday with the help of Miss Margaret's husband and friends. Thanks to them for their generosity and donation of time to help. We really appreciate it. Lauren and Carrie are planning on coming home on Monday, January 3rd after their visit with the doctor in Tucson. On Tuesday, Nathan will join us at our home in Gilbert. We will all be together in our own home for the first time in almost three months. What a celebration it will be. We miss him so much and look forward to having him back with us. We know that Lauren misses his brother as well.
Merry Christmas to all of our family and friends. Thanks for your prayers and support this past year. We couldn't have done it without ALL of you and your dedicated help. God bless you all.
Love, The Reeds
Wednesday, December 22, 2004 02:21 PM MST
Well, God sure works fast...
I picked up some hot dogs and fries for Carrie and I on the way to pick up Lauren and Carrie from the hospital. When I got them in the car, I handed Carrie a bag of fries and Lauren asks for a "bite." Since she had asked for spaghetti last night, the doctor decided to wait another two days before potentially putting her back on TPN. He said that it was encouraging to hear her asking for food and her weight wasn't dropping.
Well, sure enough. Carrie gave her a fry, she took it and starting chewing on it. At that point, we thought she would return it to mommy, but instead, she stuck the whole chewed fry back in her mouth and swallowed it. Then she asked for another and another and another.... After about five fries, might I mention dipped in ketchup by herself, she choked on a piece and picked it out of her mouth. We were sure that she would be done at that point, but instead, she put it back in her mouth and chewed and swallowed it. She ate about 12 french fries (all dipped in ketchup) before she decided she was done. In fact, she has never had ketchup before, so this was a new taste to her. Bless her heart.
Then when we got home, she asked for a drink and has drank more in one sitting than in a long time. We are so excited...this has been a GREAT day. God is awesome and He really listens to our prayers. That is a testimony of his faithfulness and existence.
Love,
The Reeds
Wednesday, December 22, 2004 11:45 AM MST
How amazingly fast does God work in prayer? Almost instantly. After posting the entry earlier today, Carrie received a visit from the doctor giving us permission to go to Phoenix this weekend to celebrate Christmas with our family. God is awesome in His presence and truly hears and answers our prayers.
Carrie's parents were so excited about the news, that they graciously gave up their bedroom for Lauren and her parents. We are so excited to see our family and Nathan on Christmas day. Thank you everyone for your continued prayers. We feel them everyday.
Love,
The Reeds
Wednesday, December 22, 2004 08:47 AM MST
It has been a while since we posted and I am sure you are all wondering how Lauren is. Lauren continues to be stable with her counts, but she is really struggling with drinking and eating. The doctors are changing and cutting back on some medicines to try and counteract the vomiting. She will drink at times, but it almost always comes back up later. Her diarreah hasn't improved either. So, each day is another adventure to see if we can get her to eat or hold down her drink. It appear that she will be going back on TPN (nutritional IV) starting today for at least one week. Yesterday, Brian gave her some milk through a syringe since she wouldn't take it from her sippy cup and she vomited it back up within about five minutes. Through all of this, she has learned how to force herself to throw up so we sometimes think she forces it herself because she thinks it makes her feel better. But, how do you know what a four year old is thinking.
Carrie and I need your prayers for patience as this situation is beginning to wear on us. Everything has gone so well and we are so thankful for that, but we miss our son, family and Phoenix. God has showed us patience but it is wearing a little thin right now. We know that there is a light at the end of the tunnel, but we certainly wish the end of the tunnel was nearer than it is.
We ask that you pray for our family during this holiday season as it will be difficult to be away from family and our son. We are waiting for Christmas until we get home to Phoenix, as long as it doesn't draw too late into January. Please pray that Lauren's stomach will start to accept drinks and eventually food.
We appreciate all of the continued support and prayers and May God bless you all during this holiday season. Peace on Earth.
With Love,
The Reeds
Thursday, December 16, 2004 08:15 AM MST
Lauren received her weekly infusion of IVIG yesterday. We are getting every other day off right now plus weekends. The doctor took her off the TPN to see if we could increase her appetite. It hasn't worked yet, but she is drinking.
The parameters for going back home are that the doctor's would like to see Lauren off of all IV medications, including TPN. Any medicines would be given by mouth. That doesn't mean that her central line will be removed as it won't for a while. It is easier to draw blood and give medicines with it inserted and she will still be getting IV's at clinic weekly as well as blood drawn.
Miss Margaret, who is an attendant care person, has come down for the rest of the week to play with and work with Lauren on skills. She used to visit Miss Margaret everyday when she was in Gilbert. Brian is heading to Gilbert today to find a new home for us all (including Nathan) to live in when we go home. He will be back on Sunday.
Thanks again for your prayers and support.
Love,
Brian and Carrie
Sunday, December 12, 2004 09:17 AM MST
Yesterday was Carrie's birthday and Lauren sang Happy Birthday to her first thing in the morning. It was very special to us to hear her singing. She loves to sing, that's for sure. We hope that she never stops singing, even if it is in the middle of the night (right, mommy). For those of you who don't know, Lauren was given Adavan before bed in the hospital right after her transplant and she had a reverse reaction to the medicine. It made her "hyper" and she sang to mommy and the nurses all night long (well, actually six hours).
We have had the weekend "off"; although it seems that our responsibilities have doubled. There are more medicines to give her and IV's to infuse. But, it still is nice to be able to take a break from the hospital visits. We ordered new glasses for Lauren yesterday since she is outgrowing her current ones. Let's hope these are more comfortable on her and she leaves them on.
Brian's mom is coming to visit today and her car is loaded with a birthday meal, goodies, sheets and pajamas. Lauren goes through a set of bed sheets or more almost every night, so it will give daddy a few breaks from emergency visits to the laundry room. We appreciate all of your prayers and support and it is comforting to know that there are hundreds of people thinking of Lauren daily. May God bless you all.
Love,
Brian and Carrie
Friday, December 10, 2004 01:49 PM MST
Lauren has been keeping her medicines and drinks down the last day and a half (no vomiting). She is taking medicine to try and decrease the acids in her stomach. She even took a couple of ounces of Pediasure (milk substitute) last night and kept it down, which is the first time in almost two weeks. However, the diarrhea has increased, which is a side effect. But, all in all, we think that this is working better. Her pancreatitis level dropped down to almost normal today and her platelets have stabilized, so we can almost count out any major complications occurring anymore. That is great news.
We will continue to try and get her to eat solid foods as well, so please pray that she will gain an appetite for solid foods. She gets the weekend off from clinic visits.
Thanks again for all of your support and prayers. Lauren is doing really well and we miss you all.
Love,
Brian and Carrie
Wednesday, December 8, 2004 08:08 AM MST
Yesterday, they decided to take Lauren off the IV cyclosporine and put her on the oral. But, after the doctor's conversed, they have decided to take her off cyclosporine completely as they suspect the pancreatitis is linked to it. So, we start cell-sept today, which is not usually as effective for preventing Graft vs. Host Disease (GVHD) as cyclosporine. Another possible complication is that it can kill cells, so her counts may drop. The doctor's are concerned enough about the pancreatitis that they feel that this change is necessary. So, please continue to pray that the cell-sept will eliminate her pancreatitis, but also keep the levels up on her cell counts and help her not to develop GVHD. We are not extremely concerned and don't want anyone alarmed, but it is the first significant setback that we have had so far. So, we are counting our blessings and continuing to pray. Otherwise, she is doing very well still.
Thank you for your continued prayers and support. We love you all.
Brian and Carrie
Monday, December 6, 2004 03:39 PM MST
Today is filled with good news and a specific prayer, as well. Lauren started to produce platelets yesterday, as her counts went from 71 on Friday to 66 on Saturday to 100 on Sunday to 121 today. Looks like we are done with platelet transfusions. Praise God. Her WBC count is at 8.3 today and has continually grown each day for the past few days without the use of nupogen. We are very excited to see her new cells growing and pray that they are the "healthy" ones.
Our specific prayer today is that her Pancreatitis level will come down. Lauren has developed a mild case of it. They think it is being caused by the IV cyclosporine, which she is on 24 hours a day. They said that it was an extremely rare side effect of cyclosporine. They are hoping that if they switch her to cyclosporine by mouth, that the pancreatitis elevated levels will come down. She is supposed to switch to oral cyclosporine tomorrow morning, so she will be able to be free of tubes and machines all day. Hopefully we can get her off the TPN soon as well. Then she won't have any more IV machines connected to her. That would be wonderful. But, first she has to start developing an appetite. She still won't take a bite of anything and the only thing that she is taking by mouth (besides her medicines) is juice. Thank goodness she is at least taking her medicines without any problems. It seems that her mucositus might be getting a little better, but she is still throwing up multiple times throughout the day.
She had a great weekend as her Mia and Poppa came for a visit. They were so glad to see her as well and played the whole time. I think Lauren enjoyed the change in company, not to mention they are her favorite playmates. It was nice to see them.
Thank you all for your continued interest, support and prayers of our family and Lauren's procedure. We look forward to celebrating with all of you on her success some day soon. May God bless you.
Love,
Brian and Carrie
Friday, December 3, 2004 05:33 PM MST
We apologize for not posting in a few days. When each day is the same as the next, it is sometimes hard to write something of interest. But, we also know that there are many people who check the journal daily waiting for the latest news. At some point, the entries will slow down, but again, we will try to do a better job of posting for a while longer. Now that the apology is out of the way...
Lauren is doing really well. Today, her platelets stabilized, so it appears that she is producing platelets on her own without needing transfusions. She will probably get one more transfusion in the next couple days to boost her levels. Her platelet level has been at 71 the past two days. So, that is great news. Her white blood cell count is also stabilizing and it also appears that she is producing cells as well. More great news. However, she does not have an appetite for anything yet, and though Lauren has always been a picky eater, she will not even taste her favorites (chocolate, Krispy Kremes, and cheese). The doctor thinks that she has some type of virus, but all of her tests have come back negative so far. He said that this is not abnormal, but that we needed to continue to try and get some food into her.
Yesterday was a rough day as she vomited multiple times, had diarrhea all day long and has a continual "mucusy" discharge from her nose that chokes her and probably causes her to vomit. When she sneezes, she always has a discharge that she immediately wipes away with her hands before mommy or daddy can get a Kleenex to wipe her. These are some of the challenges that we are experiencing. All in all, our challenges are minor compared to other cases, which we are extremely thankful for.
Mia and Poppa are coming to visit this weekend, so Lauren will be in "seventh heaven." They are her favorite visitor. She has become quite "daddy's girl" as well. We have truly been blessed by her in our lives.
Our prayers for Lauren are that she will develop an appetite for food and cease vomiting and having diarrhea. We also pray that she will not lose any of her learned or already developed abilities during the next year as the cells travel to the brain. Finally, we pray that the progression of the disease has been stopped and there is no further deterioration.
Thank you all for your prayers and support.
Brian and Carrie
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