Blessed Beyond Belief

Wow...It's been a while!!!

2010-01-16T15:58:00.000-08:00

I know its been a while since I last updated. I apologize for being slack. Anyways, not much has changed since the last post. I guess the statement "No News is Good News" is correct. Keely has progressed so much in the last 2 months. I have seen a big difference since she is now an independant sitter. She is patty-caking, peek-a-booing, finding her nose and mommy's nose, and know where her feet are. She is truly a mess. These days, she weighs 31lbs. The dietician may be cutting her calories back in February. We have to be careful to not get her overweight. Other than that, no major changes for Keely. We have been hospital free for going on 7 months now. This is the longest time out since she was born. That is something to brag about right there. Brandon, is also doing well. He is now in the maitenance part of Chemo. He will continue on for another year and then hopefully will be done. At least we are praying hard that he will be. When I get more news, I will update. Hope everyone had a great holiday! Our's was great considering last year we were in Charleston.

Continued Blessings!!

2009-11-20T07:09:00.000-08:00

I just realized that I am falling completely down on this blogging thing. I was suppose to update everyone as soon as Keely's surgery was done 2 weeks ago. I guess better than never! Anyways, Keely's surgery went fine, despite the obstacles that we had to go through to get her to the surgery day. Lets just say we went down on Monday and didn't get home until Thursday. She had her tear ducts unclogged, her Broviac removed, and she had a broch. They ended up keeping her overnight in the PICU so that they could watch her due to her past history and removed the Broviac the morning after surgery because they couldn't get another IV access while she was asleep after attempting numerous times in surgery. But, all is well now and she is loving the broviac being gone and so is mama. For one, she has the luxery now of enjoying a nice tub bath instead of a sponge bath. Who wouldn't??? Keely had a follow-up with Dr. Bonnett yesterday for the thrush and to get her H1N1 vaccination. I was also a little worried that she may be coming down with something due to a cough and increased amount of secretions. So, I suggested before the H1N1 was given that they swab her for RSV just to rule out. Thankfully, that came back negative and the thrush is gone. They also took some cultures of Keely's stool because she has had diarrhea of and on for about 2 weeks now. So, with her history of C-Diff, they want to rule it out and also checking for a bacteria infection in the intestional tract. If they come back positive, she will have to start some antibiotics. For now, that is about all that is going on with Keely. Brandon, on the otherhand, is still doing remarkable. He is currently on the maintenace rounds of chemo which will last for another year or so. He has lost his hair for the 2nd time since he started back in March. No worries for him though, because he likes to shave his head anyways. As we approach Thanksgiving, we remind ourselves everyday that we have so much to be thankful for in our lives. God has truly blessed our family the past year and a half and he continues to bless us each and everyday. OUR GOD IS AN AWESOME GOD!!!!! Happy Thanksgiving to ALL!!!!

2009-10-28T17:25:00.000-07:00

As Halloween is fast approaching, I decided that today, would be a perfect day to try on Keely's First Halloween costume. Although last year was her first Halloween, she was unable to go out due to the serious medical issues she was battling. I thank God that she is healthy at the moment. Hoping that she is going to prove medical history wrong and stay that way. She is already against the odds. Anyways, back to the costume.....I decided on a Duck for this years costume. When I seen it, I immediately fell in love with it. For one, yellow always tends to look nice on Keely. And two, its just too cute. We are still unsure of rather or not we are going to take her out on Halloween night. She really does not need to be in the cold night air. We will see!
On another note, we ask that all of you keep Keely in your prayers while we travel to Charleston Monday for doctor appointments and Tuesday morning when she has surgery. She will be having her broviac (IV access) in her chest removed, along with a Lacrimal Duct Probing. (to unclog her tear ducts) We are scheduled for outpatient surgery so lets hope that she does well with these 2 minor procedures which shouldn't take but 30 minutes start to finish for both. If so, then we will be home tuesday night. I will update as soon as we get home. I hope that everyone has a safe and fun Halloween. Take Care! With Love!

2009-10-28T11:36:00.000-07:00

Praying for Stellan!!!!

A Very Eventful Day!!!

2009-10-16T18:54:00.000-07:00

Today was a rather eventful day for "little Miss Keely". She started the day out by going to the Pulmonologist at Richland to get her RSV shot that she will have to get for the next couple of months while the RSV season is in. After that, we took her to the Fair for the very first time. Eventhough, she could not get on any of the rides, she had a great time riding in her stroller taking in all of the excitement. I will not leave out the one thing that she got to do. She got to pet the tame rabbit at the Magic Farm Show. We are beginning to see that she is going to be an animal lover. Anyways, after a couple hours at the fair, we left to return home but we had one last stop to make. Might I add, that Keely's day was filled with ALOT of firsts, because she got to go grocery shopping for the first time today. When we got home, she was so pooped that she crashed at 7 pm and slept for the night. She was worn out from all the moving around we had to do, but she was a GREAT trooper. I have to say myself, that I am so proud that she got to experience the fair eventhough she didn't really know what was going on.

2009-10-12T19:14:00.000-07:00

I know that its been a while since I last posted, but I seem to get caught in the daily grind of things around here. Although, I still find time to Facebook. LOL! Anyways, my little angel is 19 months old now and still just a growing. Not only is she growing in weight and length (26lbs 11oz and 29 1/4 inches) she is growing with learning new skills. I am the pround mama of a "New Sitter". Finally!!!!! She is still a little wobbly, but that is wearing off rather quickly. Also, she is getting sillier and sillier by the day. It still amazes me how happy she is with ALL that she has been through. I can't wait to wake up in the mornings to see her smiling face. I wanted to share this picture with ya'll because it is one of my most recent favorites. This picture was taken last weekend at my parent's house. We were getting her ready to ride on the golf cart which she absolutely LOVED. She spent more time outdoors this weekend than she has her entire life. I can tell that she is going to be an outside girl!!!! I can't wait until she is up and running outside playing in the dirt like most kids. Anyways, I am currently trying to peice together a Halloween costume for Keely. She didn't get to dress up her 1st Halloween, because she was in and out of the hospital, but I am going to dress her up this year and I can't wait to post pictures of her in her costume. I am so excited! Stay Tuned!!!!!

2009-09-22T15:14:00.000-07:00

Sorry that I am just now getting around to updating from Keely's recent doctor's visits. First of all, she is completely over the RSV and doing well. The pulmonologist says that Keely looks really good to her and her lungs sounded clear. Also, we have a consult with the Pediatric Surgeon so that we can get her Broviac taken out. The reason being, is that "Miss Priss" is starting to pull on things now and I am terrified that she is going to pull that thing out and bleed to death. She has already come close in the middle of the night when she decides that she wants to wake up and play. .Something just told me to get up and look at her. So thankful that I went with my instinct. Anyways, the most exciting news that we got was that Keely's heart function has returned completely to normal and the pulmonary pressures are normal. This is the first time since birth that they have been normal. The Cardiologist says that this is a miracle and I honestly believe that God is showing favoritism to her. I thank him everyday for that. We are in the process of trying something new with Keely. She has not had anything in her stomach besides the one medicine that she gets via the g-tube in 12 months. We are trying to bolus feed her so that we can get a g-tube button and not have the dangling tube that she has now. Since she is j-tube fed which means fed in the intestines, we will have to be completely sure that she is tolerating this before we make the switch. So, it is my guess that it will be a while before we make the switch. Anyways, this is all the news I have for now. Please continue to pray for her that she stays healthy and event free. Love you guys!!!

2009-09-13T14:49:00.000-07:00

Hello all!!! Just this past week, Keely tested positive for RSV. This is the first sickness she has had other than her complicated medical problems that seem to be narrowing down.(Knock on Wood) Anyways, on the bright side, she has not been acting sick at all. She has had a little cough with some congestion but that is about it. Thank goodness!!! Tomorrow, we will go to Charleston for follow-up appointments with the Pulmonologist and Cardiologist. Hope that everything turns out for the good.
On a much sadder note, I lost my Grandmother Thursday night. She has been battling Breast Cancer since March. I am surely going to miss her but I am really thankful that she is not suffering any longer.
Brandon on the otherhand had a repeat bone marrow biopsy last week and he got the results back. Everything was normal. I am just glad that God has blessed us this far. I want to thank everyone again for the continued thoughts and prayers. They surely seem to be working. Love you guys!!!

Can't believe my baby is 18 months!!!

2009-09-06T08:39:00.000-07:00

Its been a while since the last update and I apologize. Things have been a little busy lately. I had my wisdom teeth cut out on August 31st and as of today, I am still feeling cruddy. I have had a rough time. Anyways, on September 2nd, Keely turned 18 months old. We went for her well-visit with Dr. Bonnett on the 3rd and things went well. She weighed 25lbs6oz. She is now in the 75th percentile for her weight and the 15th percentile for her length and her circumference. Things are moving along rather nicely. Thank Goodness!!! We pray that things stay good. On another note, my grandmother was admitted to the hospital last week and is now at home under the care of hospice. Come to find out, the cancer has spread to the other breast and also to her liver. The oncologist told us that it is so fast progressing that they expect her to make it 1 to 2 months at the most. So, right now, we are trying to spend as much time as we can with her. Please continue to pray that she does not suffer. As far as Brandon, he is doing good. He has to go Tuesday for another bone marrow biopsy because his white count keeps fluctuating. Dr. Madden says that he is not expecting anything suspicious but it is better to be safe than sorry. I agree with him. I will post when we get the results back. We hope that everyone has a GREAT Labor Day!!!! Be safe and have fun!!!!

2009-08-17T14:03:00.000-07:00

Exciting news!!!!!! Keely decided lastnight that she wanted to roll over for the first time. After 17 months....it's about time!!! Every milestone that Keely overcomes is a MIRACLE in my eyes!!!! My eyes flooded with tears as she made her way to her belly. This is coming from a baby that used to cry when you put her on her belly. It amazes me that in 4 weeks the Therapists have her on another level. I am so thankful that we have the resources. I can't wait to see what she does next!!!!

2009-08-05T10:12:00.001-07:00

Monday was a long, but exciting day for us as we departed at 5:30 am to take Keely for her 6 week check-up at the Pulmonary Clinic. The doctor says that Keely is doing GREAT and they want to wean her off the ventilator by an hour a day so that Keely is only on at bedtime. Currently she is off the ventilator 8 hours a day. Another exciting piece of info.....Keely can start learning to eat again after not being able to have anything for 11 months. It is going to be a challenge but with faith....she will get there. We have a GREAT group of speech therapist that are working with her. Also, she has gained some weight since her last weight check 2 weeks ago. She is now at 24lbs and 3oz. She is getting to be a "Chunky Monkey". As I look back on the past year, Keely has came a long way. All the healthcare providers cannot believe how far she has came. It was thought that she would never make it this far. All I can say is that I have a little fighter and a strong-willed little girl on my hands. Thanks to God and all the thoughts and prayers from friends and family. Without ya'll....We could not have gotten through ALL this. It has been 3 months since Keely's last hospitalization. Time sure does fly when things are going well.

2009-07-29T06:14:00.000-07:00

Keely has decided that she wants to graduate from her crib to Mommy and Daddy's bed. The only bad thing about that is, Daddy says that he can't sleep being all crunched up. Well....I don't have the heart to not let her sleep in the bed if she so chooses. As everyone is aware, she has Mommy wrapped around her little finger and I plan to stay there. LOL!!!! Anyways, we have her therapy sessions today and hopefully she will act right. She got fed up last Wednesday with all the work. She seems to be getting stronger as each day passes, but she has a long way to go yet. I also want to take a minute to ask all of you guys to pray for a special little guy named Stellan. He is one of our blogger friends. He is currently in the hospital not doing well at all. Even if you don't know who he is, just say a little prayer please.

Please Pray For Stellan!!!

2009-07-27T11:22:00.000-07:00

2009-07-23T05:51:00.000-07:00

Keely had Physical therapy, Occupational therapy and speech yesterday. I think that she is getting stronger with every visit, but yesterday, she did not act too well. She had not had a nap all day which is very unusual for her. The girls at the Outpatient center said that they would change her therapy time to earlier in the day to see how she does. We will have to just wait and see. Before Keely's appointment, I took her in the hospital to see my grandmother, who by the way is doing really well with all the news. And, we also went by the Operating Room to see all of the girls I work with. She smiled and played with the girls and some of the doctors. I guess all the visiting wore her out. Anyways, Brandon is doing really good. He is enjoying his time back at work. He is now doing radiation for 12 days straight and once a week spinal treatments. As soon as this round is over, we will see what treatments are next. Dr. Madden says that he his really doing better that MOST!!! He and Micah went to play golf yesterday and that made his day.

2009-07-21T16:27:00.000-07:00

Today, my blog is gonna be about my Grandmonther. She was diagnosed with breast cancer about 4 weeks before Brandon was diagnosed with Leukemia. She has been taking Chemotherapy to attempt to shrink the axillary mass. Instead of shrinking, it is taking over. Today, she has surgery to remove the breast and the doctor says that he got as much of it as he could, but it was too big to remove all of it. This is a rapid progressing cancer and it is only a matter of time before it will take her life. So, I am asking for everyone to say a special little prayer for her. If anyone knows how the power of prayer works, our family does. We have been through so much in the last 16 months and I am thankful everyday that God has blessed me with a beautiful family. So, I am living on this expression..."No matter what you are going through, there is always someone else out there who has worse problems than you do." I honestly believe that with ALL my heart and I want to thank everyone for their thoughts and prayers in the past and for the continuance of the prayers. Prayer is FABULOUS!!!!

2009-07-19T12:20:00.001-07:00

Today was a very exciting day, as we took our very first family photo. (Will be posted at a later time). For all that are wondering, Keely is growing more and more each day. She is now almost 23 pounds and getting stronger every week with Physical Therapy and Occupational Therapy. We will be starting Speech Therapy this coming Wednesday. She has almost mastered sitting on her on but she gets a little excited when she tries and falls over. We still have a long way to go, but she is getting there. On another note, Brandon is doing well. He is back at work now. His last bone marrow biopsy revealed that he was in remission. God is wonderful!!!! Anyways, stay tuned for more updates.

2009-06-29T06:17:00.001-07:00

Hello All! Keely is still doing good so far. She weighed in at 21 lbs so she is getting to be a BIG girl. She is cutting her molars so she has not been sleeping all night for the past week but for the most part she has done well with them. She still gets fussy from time to time. As far as Brandon...he is still doing good also. He is done with round 3 of chemo and still having to go to the hospital every other day to have blood work done to check his counts. The doctor says that he is expecting him to get to return to work in August. He is more than ready!!

2009-06-27T14:29:00.000-07:00

Keely got home from MUSC on May 26th and at the moment she is doing GREAT. She had a follow-up appointment last Monday and the doctors say that everything still looks good with the pulmonary hypertension and her heart is functioning normally. She is still on trach collar for 8 hours a day only and the rest of the day she has to be on the ventilator. The doctors say that this is temporary until her lungs can grow and get healthier. Please pray that she continues to do well and that we stay away from the hospital. Also, an update on Brandon...for those that don't know, Keely's daddy has Leukemia and he just had another bone marrow biopsy and the oncologist say that he is in remission at this time. We are truly blessed to not only have Keely but that Brandon is doing as well as he is.