Friday, August 28, 2009

Ty's hemoglobin was 9.5 today. It is not alarmingly low, but I am sad to see it coming down again. He has gone two weeks without a transfusion so he has a new personal record...I still hold out hope he will stabilize on his own but prepare for a transfusion each time we get him checked. It is better to be over packed than under when facing long days at Kosair. He slept through today's blood test....funny, he screams through diaper changes but sleeps through blood tests! He is officially out of our bedroom now. I had to wake him every three hours for feedings until his weight stabilized so now that we are more comfortable with letting him sleep, I moved him into his nursery. He's done really well. Although he still wakes every three hours to feed. The sad thing is that on his white crib sheet I can see his little black hair. I thought it was looking a little thinner, now I see the proof. He smiled at a stranger in the grocery yesterday....I don't like how comfortable people are about approaching him in public since we have to keep him healthy for possible transfusions but was thrilled to see him smile at an older lady. He has been unsettled around strangers. Greg thinks it is because so many strangers stick him. I think he likes to keep Mommy, the food source close! Crying is a quick way to find himself back in my arms. I suppose the sling will be the only way he shops from now on since the car seat left him accessible to strangers who had no problem touching him.

Erin is adjusting to high school. She has had some overwhelming days and gone to bed exhausted several times. I am amazed by the amount of homework and unnecessary projects. She is attending her first football game tonight with friends and her boyfriend, Aaron who attends a different school. He called me last night to ask permission to be at the game with her.....he seems like a really good kid. We are finding the names to be a bit of a challenge in conversation but last names help! Kate says she found Aaron first. He was her favorite "boy teacher" at church. She honestly thought she could compel Erin to leave him alone because she likes him too. They are 10 years apart! I was in no way prepared for that!

Monday, August 24, 2009

Ty maintained!

Ty's hemoglobin has maintained 10.7 since Friday...that is a great sign. We hope it holds this time. Now, I get to spend a gorgeous day on the phone with the insurance company and billing departments.....

I've been listening to our sermons on CD because we've been leary of taking Ty around so many people/germs with all he has going on. I listened to one Kevin did the weekend after Ty was born on "brokenness". It was so powerful to hear the word of God speak specifically about healing our spirit in our brokenness. This year has been a tough one for us. It seems that everything we touch breaks, our health has been challenging, the baby's health has been in question throughout the pregnancy and certainly since the delivery, Greg deals with daily pain as a result of a surgery that was supposed to eliminate it, etc.....I am feeling trampled and discouraged. I am so grateful for my Father in heaven who is not only willing to walk this road with me, but carry me in my weakness.

Sunday, August 23, 2009

Happy Birthday Theresa and Brennen!

We drove to Theresa's yesterday for a fun filled birthday party for Theresa and Brennen. It was gorgeous outside, although a bit too cold for the water slide. All the kids gave it a shot but in the end, the weather won. Uncle Jamie started a baseball game of sorts and promised $5 per hit that went over the fence. He cut Makenna off at $20! She was thrilled! She was $30 away from having enough money for a DS and game combo so she had some pretty awesome line drives in hopes of achieving her goal of that $30! Brennen had a monster truck themed party and was excited that Ty wore his Monster Truck outfit (adorable gift from Erin Jackson). Theresa has great in-laws that are always fun to see. There are three little boy cousins that are all two years old and they all have handed down their clothes to Ty...we have enough to outfit Kristin's little guy too....thanks again guys! Ty, who typically objects to being in the car, traveled well. All in all, it was a great day.

Friday, August 21, 2009

I took Ty in for his routine blood work this morning and was a little discouraged by the results. His hemoglobin dropped a gram a day to 10.7 from 14 on Monday. I will take him in again on Monday rather than wait for his next appointment with the hematologist on Wednesday. It is nice to have the weekends available for company. We were always afraid to make plans but we seem to be on a workable cycle for now. Last weekend, Pam and Ken, our neighbors back home came down for a day and this weekend we are attempting a drive to my sister's for a day to celebrate my nephew's 5th birthday. Most of the photos were taken by Makenna with Ken's camera last weekend. It is always great to see them.

Monday, August 17, 2009

After Ty's appointment today, I took a few photos of him with his proud big sister, Kate. He didn't feel very cooperative so the pacifier stayed! Ty's hemoglobin was WAY UP to 14 this morning! His body appears to be rebounding on it's own again. We don't have to go in for another blood test until Friday....4 days with out blood tests are something to celebrate!

Sunday, August 16, 2009

"Don't Bug Me"

Ty's wearing the outfit we think he should wear the next time we have to go to the hospital! He was really alert and playful today so I had to grab the camera. He is such a sweetie.

Erin and Kate were also feeling rather playful together. We love time and lots of relaxing.

Saturday, August 15, 2009

Another full day....

We got a late start this morning, believing we were on the upswing with Ty's hemoglobin levels. I enjoyed sleeping in and having Lauren's pancakes before heading to Floyd Memorial for lab work. They were backed up and their machine was not functioning properly so it was 12:30 before we discovered Ty's level dropped off again to 7.5. I was so disappointed that I literally cried in front of the poor lab tech that delivered the news. We headed to Kosair for Ty's third transfusion. It went more smoothly than the last two but we didn't get home until just before midnight again. It just makes for a very long day. Poor little Ty knows that every time the door to our room at the hospital opens he's going to be picked on so he fusses. Otherwise, he just sleeps through it all. The doctor we worked with today (who issued orders completely different than the previous two doctors ordered) indicated to us that they can suddenly drop levels up to three months into treatment. That was not the news we wanted to hear, but at least we won't get our hopes up too much with the next improvement.

I ran into my OB/GYN at the hospital and had time while we waited on Ty's lab results to discuss his condition. She shared with me that she screened my blood when I was in the hospital for preterm labor and the anti c antigen test was still negative at that point, 30 weeks. So, they tested me three times before I was admitted for labor. She saw the results from that test and called the pediatrician to warn her to watch Ty because the antibody levels were "sky high". Greg and I believed the doctor had dropped the ball, when in reality, they did all they could. She is contacting the high risk specialist to inquire if something more could be done in case they run across this in another patient.

Ty's weight concerns were also laid to rest today. The doctor's office on Wednesday incorrectly converted the kg to lbs. Ty weighed an impressive 9lbs 7ounces today! With the correct conversion, he really weighed 9lbs 1ounce on Wednesday. I had doubled his formula supplement because I was told he hadn't gained weight in over a week! So, he's going to be grumpy, but his supplements will be weaned back again!

Thursday, August 13, 2009

Erin started high school today!

Our smart and beautiful daughter has entered the world of public school after 5 years of home schooling. She will be missed more than she knows as she takes on this next chapter of her life. She has already completed summer school gym classes and made a lot of new friends. Our youth group at church has been another avenue for her to make contacts she'll appreciate as she enters such a large building. Please keep her in your prayers (Mom too) as she adjusts to her new environment and expectations. She is excited and will thrive, I am sure.

Wednesday, August 12, 2009

"Cautiously Optimistic"

We went to Kosair with the expectation that Ty would be staying for a blood transfusion today but his hemoglobin was 8.6, up from 8.4 on Monday! This is the first time he's increased after dropping! We hope it means he is stabilizing! He has another blood test on Friday to monitor. We aren't out of the woods yet, but this is a great sign that things are starting to improve. Thank you so much for the prayers! They are working!

Monday, August 10, 2009

Hemoglobin Count

Ty's number was down to 8.4 today so we are going to Kosair on Wednesday with the expectation that he will need another transfusion then. He's handled the last two so well we anticipate the same again. Last week, his numbers stayed so much stronger we pray this is the last one and that he levels off after this. So, Erin and I are on our way to find a walk in hair salon to get much over due haircuts today. We can't make plans for anything more than a day or two in advance and that doesn't work for our salon!

School starts for Erin on Thursday and I am not ready! Where did our summer go? I can't decide if I am ready to start school for the other girls that day. I would like to stay on schedule with Erin but can't imagine being ready this week!

Sunday, August 9, 2009

The Boys!

It's a rough life! Greg, Ty and Brutus recovering from a full weekend of visitors. Ty's hemoglobin was still 9.7 on Friday so we got a weekend off from hospital visits. We start again on Monday. It was good to see everyone finally but Ty was rather fussy, which is not typical for him. He will be 4 weeks old tomorrow....time flies when you are busy!

Grandmas and Grandpas Galore!

Since we had a weekend free from hospitals, both sets of Grandparents came for a visit. We were excited to also introduce Ty to his Uncle Brad, Aunt Jessica and Little Miss Elizabeth Grace "Lizzie".

Tuesday, August 4, 2009

A Great Report/Weather Maddness

Ty's hemoglobin was up to 10.7 today! His weight was up to 8lbs 8ounces too! We don't have to to back until Friday morning for another CBC. If he drops to a low 8 or below by then, we will have another transfusion that day. If it is a high 8 or low 9, they will plan on one Monday rather than the weekend....hallelujah! Historically, Ty should have been down to around a low 9 or high 8 by today, so the last transfusion appears to have helped him.

Crazy weather entered the area this morning, making my commute to the doctor rather challenging. We got 4 inches of rain in an hour! It was wild to see all the different roads completely washed out in flood water. There are properties around us under water. The bridge by our house has water coming up to is the same bridge they told us would be washed away in a big rain storm! They can't get that fixed fast enough for the residents here! We were all gunning it across to make sure we didn't also end up washed down the creek. Honestly, there is no end to the excitement in our lives.

Monday, August 3, 2009

Normal Day....YEAH!

I had a normal day today....Since Ty didn't have to go anywhere today, I made lots of insurance, billing and UPS H.R. calls this morning to try and make headway on the bills that have started rolling in for Ty. When I called two weeks ago to have Ty added to our insurance, the computer tossed me out of the system and didn't add everything that is being billed is being denied. Good times. Anyway, I dealt with some knowledgeable people who are trying to be helpful. Praise will be a process so getting people who know what they are doing is half the battle and we're there....

So, on my "normal" day, I was able to write in Ty's baby book and adhere some photos into his scrapbook. My friend, Stacey gave me some pages she laid out for him so the process was quite simple and the results are beautiful.

I did have to call the hematologist's office to make Ty's next appointment and was told by the nurse practitioner that we should anticipate a long day when we arrive tomorrow because they won't be surprised if he needs another transfusion as soon as tomorrow. I can't imagine we are in that situation again already but will know more after his CBC. Bless his heart, he needs a break.

Sunday, August 2, 2009

"Emergency" Blood transfusion?

Dr. Rezaei called today at 3pm to inform us Ty's hemoglobin as down to 7.4 so he needed to be admitted to Kosair immediately. We were in his room by 4pm and the finally started the transfusion at 10pm! Honestly, we are beyond frustrated by that hospital. The "rules" have changed since last week? This week, they tried to admit him for 24 hour observation, stating it was standard. We didn't have that last week. This week, we had a resident on her first day and an on-call doctor who is unfamiliar with Ty's case who made decisions over the phone rather than assessing Ty himself. We finally got home at 2am because they waived the lab work afterward that was required last week......

One nice thing that came out of today's ordeal was the IV team member who was able to get one started on the first try. He didn't have to have it in his head this time. We also had the same nurse we liked last week. She was great again. She went to bat for Ty when the resident was trying to rush the transfusion and administer it in two hours rather than the 3-4 hours he needs to have it safely given. Honestly, we sat there all day and in the end, she wants to rush it and get us out of there?