Steve's grandma went to be with the Lord on Friday. I got the privilege of seeing her a week ago Monday. She asked me how I do it? I asked her how she did it? :) She raised 8 children, 1 of them special needs! I only have 5, with 1 special needs! She said, "I just did it." Grandma was a caregiver all her life. She cared for her siblings, she cared for her children, she cared for her special needs child until Bev passed away in 2003. At that time, grandpa's health was failing, so she cared for grandpa until she got ill 3 weeks ago. She hauled wood, she canned, she made pies, she cooked, she cleaned, she was constantly going. And I never once heard her complain. Together grandpa and grandpa raised 8 amazing kids. Is was a privilege to see them all work together this week as they reminisced, made plans and took care of grandpa. They take AMAZING care of grandpa. A few things struck me this week. At the graveside service we said the Apostle's Creed and sang hymns. How many families now days can do that and know the words? Ours can! Steve and I are quite "old school" and that was a proud moment when you looked around and the old to the young knew the words and it really felt like it was from the heart. They raised their children to love the Lord and share that love.

As a family with a special needs child you wonder, how will this affect our children? Will they grow up successful, will they resent all the time we had to spend at the "spa", where will their hearts be? I obviously can't say for my family just yet, but I watched a family this week that is GREAT! They care for each other with love and compassion, they are successful in so many ways.

Love.......is it easier to loose a spouse when you are young or old? I've heard people ask that question many times. I don't think there is an answer. Anytime you lose a spouse, it just isn't right. Grandpa and grandma had been married for 65 years! What a milestone! There were postcards that were between grandpa and grandma when he was in the war. He called her his "sweetheart." To watch this sweet man hold his wife, tears streaming down his face. All I could think is, "it's not fair!" No matter what the age is, It's not fair!

Obviously grandma was an amazing woman, wife and mother. What a wonderful role model and something to strive for. God Bless you Grandma! Thanks for being a Godly woman for us to follow.

It's all good

Hebrews 11: 1 "Faith is being sure of what we hope for and certain of what we do not see."

Jesus Calling devotional said " Trust me and refuse to worry. I am your strength and song.........I can empower you to handle each task as it comes." Obviously there is more, but I think you get the point. I actually was looking up another verse this morning and I noticed I had Hebrews 11:1 underlined. When I did this I have no idea, but it was meant to be read this morning.

Yesterday Brooke had appointments (of course, when doesn't she :) 1st was the surgeon. I did apologize for canceling the tests he had scheduled. After talking to him he agreed Brooke does not need further testing. She does have a hiatal hernia, which means part of her stomach is pushing up through the diaphragm in her abdomen. Many people have this and hers is from her nissen. But she is having no symptoms, she's not refluxing more and not vomiting. We agree if she starts to have symptoms we will call him. If not, then we'll just wait.

On to clinic......she is still on blood thinners and will be until beginning of October when she has another CT. From past blood work it looks like she did have a blood clot, but the CT will be the proof. With the tantrum I had about starting her on blood thinners I guess I have no comment (hehe, what can I say) :)

On to T cells. What do you do when the MD comes in, sits down and says in his little accent, "Shelly I don't know what to say?" I just smiled :) It seems Brooke has puzzled them again. Many of her T cells are going up. Her B cells, which they thought may never en graft have made a huge jump up. However her donor cells (Megans) were at 85% and are now at 20%. Also her over all TREC was at 498 and dropped to 150 (that's not good). They are getting such mixed signals the MD's are confused and don't know what to do. There are 2 things that may be happening. She is either going to reject the transplant and start making her own T cells. Or she is going to reject her transplant and we are going to see all her numbers drop. Steve put it a good way. It's like our safety net has been taken away and now we are waiting to see if Brooke is going to soar or fall. The MD said IF she starts making her own T cells this is VERY rare. He said it's more like a miracle. We are up for miracles :) Fly Brookie Fly!!

Steve and I were discussing our child and I said, I felt worse for the MD than for us. They want so badly to have answers and fix her. It's hard for them to not know what to do. I reassured them, it's all good. Of course we want her fixed but at this point every one's hands are tied. All we can do is wait. Steve and I don't see numbers when we see Brooke, we see a perfect child made in God's image. Dr. Duffner and I also talked about treating the patient. When you look at numbers you get worried, but when you look at the patient, she looks great. She's walking, she talks, she's doing great. Until there is a change in her condition, we just need to hang tight. Of course during our 30 minute conversation Brooke had to cough a couple times. He asked when that started. I told him, "it's Brooke. She's been doing that since birth." :) So I had to promise if she has any change in her condition I'd call right away. Worry warts :)

So, I assume we will be in clinic again next week. Have a great week! This weekend is the Breast Cancer walk/run in Grandville. YEA for all the breast cancer survivors! Leah and I plan to be there for Grandma Koeman and Grandma Blueberry! We've seen fighters and survivors 1st hand. And we are so blessed by them!! Thanks mom's!!

Walking

HERE IT IS!! Hopefully our next milestone will be no more diapers :) (wishful thinking)

God's Plan

Do you ever wonder what God is doing? Friday was my work day and the "spa" needed Brooke there at 12:30 for a lab draw. It would all work out, I just had to be organized. So I had everything ready at night, diaper bag, clothes laid out, backpacks ready so all 7 of us could be out the door at 7:45a. I got up at 7a (we aren't early morning risers :) to find Miss Leah on the couch all cuddled up. She didn't look so good. She was HOT and glassy eyed. She had been hanging out since 6am. She said she had a sore throat, and wow did it look gross. Steve and I went to get ready and Steve said, "now what." I just laughed. I said, "no problem." I didn't have a plan but I have a great gift of self talk. I can talk myself into thinking anything is ok :) So in the 45 minutes we were up, a new plan came together and it all worked out. Grandma's for the girls and Leah til 11a. Steve and I worked, then Steve went to Spectrum with Brooke and I to the MD with Leah. We all met back at home. Leah is on antibiotics and we pray gets better quick. It bothers her so much when she can't be around Brooke, but today she felt so bad she didn't want to be around her.

Brooke: they are increasing her blood thinners again and we check her blood work again on Tuesday. She also see's the surgeon on Tuesday for her nissen. They wanted to do testing to see to what degree her nissen(the surgery she had so she cannot vomit) had loosened up. But Steve and I didn't feel testing is necessary. There is no need to change anything right now, so the less testing the better. We have found we need to be her voice. I think some people are getting sick of hearing us :) Dr. Mageed is also waiting on all her T cell results and then he will send them out to his posse of MD's to be reviewed.

ALSO, Brooke's neuro-developmental MD called me today. (a side note...I LOVE Spectrum because the doctors call me. Not that nurses aren't great! But sometimes I want to hear it right from the MD or PA) Anyway, I told her about the feeding issues and stopping the feedings. She said, "yeah, we aren't going to do that." She confirmed all my fears. She said Brooke will starve herself. She's done it before and will do it again. She will get dehydrated. And now is not the time for "tough love." Yea, we aren't bad parents :) She was also speaking from experience. She said she had tried this before. With "normal" kids this works, they will eat. With not "normal" kids this won't work. She said she has seen kids in renal failure due to dehydration and stress fractures from not the right nutrients. As much as Brooke looks normal (at least to her parents) she is not normal on the inside. Her insides are messed up more than we can fathom. We need to be cautious of this and move forward accordingly. That just put my mind at ease. When we see her in December we will discuss feeding options, clinics and see if it's time.

Today, Saturday, Brooke started walking for REAL!! Across the house she goes. I've been trying to download a video for an hour and it's not working. I'm bummed! She's taken steps, even gone 5-6 feet but today she went from 1 room to the next, laughing the whole time. It's a strange feeling. Steve said, "that's it, all our kids are walking." It's amazing how perspectives change. We didn't know if she'd be here, let alone walk, but it's another mile stone we got to see her and Macy do. The best is when Macy takes her hand and away they go. YEA GOD!! We are so blessed!

Brookie's belly. All those spots are where she gets her lovenox injections. She actually hardly cries at the injection anymore, just the fact it's going to happen. Now her belly looks like Uncle Jon's. Except he doesn't have a feeding tube :)

Leah on the couch sick. She will KILL me if she sees I posted this. HEHE :)

Steve's new combine. He wouldn't let me put a picture of him in but he volunteered this photo :) If anyone needs combine rides, it'll be starting soon :)

Have a great weekend. Pray for NO MORE RAIN!! Time for those farmers to use the combines.

Blood draw

The clinic visit was quick. Brooke and Macy hammed it up and showed off. Brooke's blood was not in the range they want it so they will increase her Lovenox dose and we will recheck it on Friday. The plan for Lovenox is to give it for 3 weeks and then recheck a CT scan. If the scan is unchanged we will stop the Lovenox. If the CT scan is better we will do Lovenox for 4-6 MONTHS. Yes, I said MONTHS! Not sure what to pray for so, His will be done, and I will do what is asked with a smile on my face :)

Her T cells...........she has once again stumped the BMT team. Her T cells have increased.. YEAH!! Not sure exact numbers yet, but they are higher than 3 months ago. However, her donor cells (Megan's cells) have decreased. That doesn't add up. I told them it's a lab error. Nope, they checked that. Meg's cells are down 20%. So when Meg's cells go down, in theory, Brooke's T cells should go down. Dr. Mageed did find a study where a kid eventually rejected the donor and started making their own T cells. So, maybe? They really don't know. They drew more blood this week to see if her T cells are good quality ones. Hopefully that will put some pieces together. If not, that's ok too. I trust the staff at DeVos. They are honest enough to say they don't know. I have faith enough to say, "I know." It has nothing to do with any of us. Our sermon on Sunday was about Peace. Finding peace in the circumstances we are given. For each of us that is different. Having harmony and balance in our lives. This time of year that seems difficult with the beginning of school, sports, work, kids. But when I think about it, this life was given to us. God gave us these circumstances so we can make a difference to others. Complaining about how busy and tired we are doesn't show Him glory. But once we find the peace that is always there, we also find the balance and the harmony.

So my goal is to have the peace with this craziness of life and the uncertainty of syndromes. Once again I don't know what to pray for. Donor cells, T cells???? So it's for His will do be done in Brooke's life and our life. Because what I "think" needs to be done, may be wrong. (yes occasionally I am wrong, but don't tell Steve :)

Here we go again............

Time keeps going and I'm not sure what we do :) With school, work, soccer and Brooke, our days seemed filled. We are so blessed to have an awesome babysitter 2 days a week for the school year. I can go to work and have a somewhat set schedule. And I don't feel like I'm bugging our parents CONSTANTLY!! Not to mention, I think the twins like Miss Dawn more than me :) She is much more fun!
Soccer started on Saturday. Want to see a crabby Shelly? (more crabby than normal :) put me in the rain with twins! The other parents seemed ok with it, not sure what my problem was. I'm, however, am going to go out and by an umbrella that is off limits from my children. It seems every umbrella we have gets broken, hmmmmm??? But Megan and Ashley played soccer and had fun. So, it was worth it.
On to Miss Brooke. I'll back up my thoughts to try and give you the whole picture. 2 weeks ago when this whole port issue started with bulging veins and swollen cheeks I said to the MD and PA, "I am not doing blood thinners." It was a thought that was on my mind and I told them. They smiled and said, "we were thinking Lovenox." That's a blood thinner that is giving subq (under the skin/a shot) 2 times a day. I smiled at them and said "no thanks." (notice how polite we all are). Well after all the testing was done Dr Duffner called me on Friday. The CT showed a questionable blood clot. She still has the narrowing of the vein. They aren't sure if it is scar tissue or a blood clot. So they want to start her on, you guessed it, Lovenox. I already told them no, they must have forgotten that. I don't wait to give my daughter a blood thinner when she's ALWAYS falling, for a questionable blood clot we don't even know that is there. So I called Steve. He graciously listens and says, "you better call my sister." (pawn me off) So I try to leave Lisa a message and end up crying on her voicemail. (WOW what a head case I am). Lisa calls me back and talks sense into me. A slight risk of bleeding OR a bigger risk of a stroke. After talking to Lisa the MD also called me back to "persuade" me. OK, we give Lovenox. It was actually a much longer conversation, but I'll save you all that. Lisa wishes she could have been saved :) However I am so glad God put such awesome, rational people in my life. I've been reminded how hard change is at any age. We get into our routines and we don't want to change them. I was also reminded by someone I have looked up to forever, to take off the mom hat and put on the nurse hat! As much as I want to be a mom, at times I need to be a nurse. Stop rationalizing things and feeling bad, instead just do what needs to be done and have some common sense. Do I enjoy giving my daughter 2 pokes a day? Nope! I prefer not to, but I'd rather have her with us, so I will. I think the funniest thing the MD said was "she'll bleed easier so make sure and protect her from falling." HAHAHA! SHE'S 2! The Great Healer will protect her. No worries about that. We will do the task at hand and let Him take care of the rest.
Tuesday she has an MD appt and blood draws. They did draw T cells last week. Not sure if they will be back yet, but with everything going on, not sure I care :) My brain is filled so if we have to wait another week for results I am ok with that.
We'll keep ya posted. (as for feeding, we are still doing tube feedings. She is taking baby steps towards being interested in food. We keep giving her food and will continue. Have I turned off the tube feeding for 2+ days? Nope. Not up for the challenge just yet :)

Tough Love

I'm sure many of you have heard that saying. "Gotta have tough love." Steve and I have read NUMEROUS books on parenting. We have strong willed children (hehe, I don't know where that comes from :) and, at one point, we were looking for all the answers. Can't say we found them. But anyway, Brooke had occupational therapy yesterday. Great lady and very smart (I've come a long way with therapists). She made some wonderful points for us to ponder. They keep treating Brooke for "oral aversion." Which means she won't put things in her mouth, is scared of texture and we need to "retrain" her. Steve and I didn't feel this was a problem. So we showed the therapist. Give Brooke a grape. She plays with it, brings it to her lips, but does not put it in her mouth. Give her a rubber super ball. In the mouth it goes. She chews on it! Takes it out, yells "look mom" and shoves the whole ball back in. Give her cotton candy, plays with it, brings it to her lips and back on the floor. Give her a cotton ball, right in her mouth. Stumped??? She sat and watched Brooke, coaxed her and said, "your daughter is very smart. It may just be time for tough love." Her suggestion, turn off her feedings for 1-2 days and see what she does when she gets really hungry. In theory that sounds good. As a medical minded person that makes sense. As a mom, it makes my stomach turn! I understand tough love to an extent. My children aren't that old. We've disciplined children, taken away privileges, toys, TV, go carts. I think one of the hardest things we've had to do was tell our 7 year old, who is not fond of medical things, that she HAS to be a bone marrow donor and there are no options. Through that we saw God's Grace! What a wonderful amazing experience. But now we are asked to stop feeding a child so MAYBE she will feed herself. The therapist said, "you have to be ready and strong." I don't think of myself as weak, but I've decided after 24 hours of pondering, I'm not that strong. There are too many what ifs running through my mind. My God can calm the sea's and heal the sick, I'm pretty sure He can, in His time, get a kid to eat.

With all that said, Brooke did munch on a Cheetos and drink watered down milk. She also still enjoys the super ball :) We will try but in smaller dosages.

Just before I sat down to write this I opened a book "Jesus Calling." For today it said "Walk with Me along the path of trust." And that was just the first line!! Thank you Jesus!! It talks about whispering "I trust you Jesus." Isn't He amazing! I've learned when my gut says, "I'm not sure this is right," it's probably not my gut. It's God nudging me saying, "trust in Me." We have trusted in Him to take care of her. At times we have begged Him to heal her and let us keep her and He always ceases to amaze us. Why do we think this will be any different?

Wow, I got long winded again! I need to set a limit on my "venting." :) Brooke did have her CT and did great. We will wait results. We did get a call from a surgeon about her last CT but I will fill you in next time. Lets hope this one is free and clear :)

Psalm 9: 10 Those who know your name will trust in you, for you Lord, have never forsaken those who seek you.

What a fun weekend! Sunday we climbed Mt Baldy with the Koeman family. I carried Brooke in a backpack. Every time I stopped she said "whew!" Like she was really working hard :) On the way home the girls asked if dad would take them tent camping with Uncle Mark and their cousins? I told the girls we just did something fun maybe we should wait to ask. Megan was "whispering" to her sisters and said "let's ask dad after his nap." HAHA, smart girl! Steve did not nap but he did take the 3 oldest girls tent camping by Uncle Marks pond. They were excited that they didn't have to change their clothes OR brush their teeth, and there were not toilets. Whoo Hooo. They had alot of fun and ate smores and cookies for breakfast :) The picture below is of Ashley. After camping I told her she needed to rest. She said "I am NOT napping. I DON'T nap, I'm not a baby." I agreed and said, "just read a book, please don't take a nap." hehehe. It looks to me like a "nap." :)

Onto today. Port out! Someone at the hospital said, "it kinda feels like you are cutting the umbilical cord, right?" WOW, he was SOOO right!! Brooke's broviacs/ports felt like our "lifelines." And now it's just been snatched. In reality, we don't need it. If she absolutely does need one, we find a way to put another one in. I also suggested since we have to poke her for blood maybe we should wait and check her numbers less frequently. My thinking, if we aren't going to do anything or change anything, WHY do we keep doing this. When we check her T cells, in my mind, something is going to change for the better or worse. But for the past 6+ months not much has changed. I asked again for a "plan" today. Someday they might surprise me and give me one, but today wasn't the day. They again reminded me she's healthy. She has sisters that live their lives, come home with "germs" and she's ok. When was the last time we were inpatient for an illness? Almost a year, knock on wood :) So, enough complaining and start rejoicing . God's plan is far greater than ours. Brooke did great today. She was not happy about the IV but the nurses got it 1st try, it took 45 minutes to remove the port and they also removed some scar tissue. She's back to herself. I was all excited telling Steve, "we have a new kid, no foreign objects in her." I guess I forgot she's tube fed and has a feeding tube :) That's ok, we'll take her, tubes or no tubes.



I can't help by share my devotions again. It just spoke to the way I've been feeling. "On some days your circumstances and your physical condition feel out of balance: The demands on you feel far greater than your strength. Days like that present a choice between 2 alternatives - give up or rely on Me. .......I will not reject you. You can turn to me at any point.............I will infuse my strength into you moment by moment. Trust me."
Jeremiah 31:25 "I will refresh the weary and satisfy they faint."

Obviously giving up isn't an option. So we rely on Him! Much more satisfying. Give it a try :)

The results are in.........

Steve and Brooke went to CT scan early this am. Then at 12:30p Brooke had therapy. The therapist was happy with Brooke's progress. She did say Brooke's calf muscles are under developed and was thinking she might benefit from AFO's. They are braces for her legs to help her with walking and stabilize her more. I said "ok, yep I understand," and shook my head. In the back of my head I was thinking "I am not putting those on my kid." I guess I just see Brooke's progress differently. At the end of the visit she said, "let's just wait another 2 weeks and see how she does." Ok, happy with that decision :)

MD office called in the afternoon. CT showed Brooke has inflammation in the vein that her port is in. It's also narrow, probably from the inflammation. It's not infected and they did not see a clot. The veins we see are Brooke's body making new ways for the blood to get through ( a bypass). She has made her own bypass to make sure she is still getting blood flow. (that's smart :) So her port needs to come out next Tuesday and on Friday they'll do another CT scan to see if that vein restores itself or collapses. They say even if it collapses she has made enough of her own bypasses to be fine. Hopefully then the puffiness in her cheek will go down. So, with all that being said, I was not happy. Actually the only thing they could have said to make me happy was, "she's all set, nothings wrong." So they were in a no win situation. The PA was so kind and patient with a neurotic mother :) I had a bazillion questions running through my mind. When 1 thing goes wrong, I wonder how many more are around the corner. So after my mini mental breakdown, I'm good :) They will not put in a new port just do regular blood draws monthly. After much thought and thinking something is majorly wrong with my kid (like she's normal or something :) I've come to this conclusion. It's in God's plan! We are getting rid of hardware we don't need. We are decreasing IVIG to every 3 weeks, so things are heading in the right direction. They will also draw her T cells next week. Once again BIG NUMBERS!! I will say, if they go down, you might all see a full mental break down, not just a mini one!

Sisters Sand angels

Cousins