More On Hemophilia

Seeing as I haven’t gone into much detail regarding hemophilia up until this point, here is a link to find out more. One thing that differs from the information given is that it states that hemophilia is inherited from the mother. While that is true, 1/3 of hemophiliacs result from a new and spontaneous mutation. At this point, we still do not know if I am a carrier or not (we have no family history) and we are awaiting DNA results. So the mutation occurred in either myself or Blondie, but that is still to be determined.

As for Blondie, he is doing great. He is still on twice a week prophylaxis, but he has no qualms about it. It’s become normal and much less of a stress to deal with. What a blessing that is to my heart that he is relaxed about it. We are now learning how to give him his infusions at home.  I get quite the responses when my husband and I joke that while we might not get out on dates much, for ‘fun’ we now sit at home and take turns practicing our venipunture techniques (we take what we can get).  Blondie thinks it’s great. Not only is he not getting the pokes, mom is poking dad.

Just last week he got a custom brace for his left leg to try to protect from another knee bleed. Next month he is having an MRI of his knee. While we still hope that after his MRI we might not have to continue with prophylaxis, we want to be prepared to do it at home, and so far things are looking good.

As for the rest of us, we have been doing our best not make a huge deal out of Blondie’s situation, but to include everyone as much as possible. This certainly can be a challenge sometimes as we want to avoid extra trips to the hospital, yet don’t want to become overprotective (we’re still working on this).  And in the name of our new ‘normal’ (not to mention making things easier by not having to arrange childcare), this month the rest of the kids began coming along to Blondie’s infusions. The kids handled it well, and their responses to seeing their brother get his injection were really neat. They have a new appreciation and respect for what he has to go through, and it certainly feels like we are in this together.

Though we still have many questions (the biggest of which seems to be to what degree to attempt to bubble wrap the little goofball) and we don’t know what circumstances we will have to deal with in the future; we know we serve a God who will never forsake us, is our strength when we are weak, and gives peace beyond understanding.

January

Buddy. I still can’t get over how fast my little boy is growing up. I truly enjoy you and being around you. When you set your mind to it, you are a focused determined boy, and other times the slightest thing can distract you. You are an excellent imitator (just like your dad) and you are so animated when you recount things. I love hearing things from your perspective. This month you got your first goal during a hockey tournament. You were so excited! You’ve also almost got a few more goals. Good job little man! I still think you like hockey more because you get to see your buddies than for the game itself, and that’s good with me.

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Blondie. One day you asked me if you had to get a needle the next day. I said, “No, not tomorrow, the day after”. You paused, thought for a moment and then said, “In two tomorrows?” I love how kids see things! After one of your last infusions, I was so impressed by how calm you were. When we were walking out to the car, I asked you if you were scared. You said, “No, mom, I wasn’t scared”. Wow. Thank you God, for being our strength and for ministering to Blondie through this whole thing. Blondie you love your baby sister. You still ask to hold her all the time and you take such good care of her. You can easily make her laugh and it’s easy to see that she thinks you are pretty awesome!IMG_3939

Happy. It’s official. I can’t keep up with you. This month we finally managed to move our piano from our rental property to our place and you love it. You’ve watched me play a few times and now mimic me move for move. You sit at the bench, play a bit, sing at the top of your lungs, then proceed to lick your finger and turn the pages while repeating the process. Love. You are also going around singing all the songs from the boys’ music lessons, but sometimes you get the words mixed up a bit. This month, according to you, the song went, “I’m a little monkey, peanut butter sandwich!” We finally managed to teach you to ask for a “Kleenex”, up until now, you would say, “I need a booger.” You’ve watched me put on make up and lip gloss and always want to put a bit on as well. I often find you rummaging in my purse looking for “lips lips” (lip gloss).  “Kwiss” means “kiss”. When asking for something you say, “May I you please…” You are way too sweet…IMG_4032

Button. You are rolling!!! Both ways! This is ridiculous! You are pretty impressed with yourself though. Your brothers and sister think it’s your new trick, and they are right. We sit there watching you roll just for fun. You have also discovered your tongue and like sticking it out. What a goof…IMG_4013

December

Buddy. You’ve been a lot of fun lately… You started “sneaking” around. I keep seeing you out of the corner of my eye trying to hide, sneak up on me or even snatch things right out from under my nose without me seeing you. My favorite part is your complete astonishment that I almost always see you. I told you the other day that I had eyes on the back of my head, and that’s kept you on your toes ever since! I love being a mom…. You also really enjoyed Christmas this year. This is the first year we’ve had those chocolate advent calendars and you surprised me by how well you counted backwards as you counted down to Christmas.

Blondie. You’ve been SO brave! I am so proud of you. You are on twice a week infusions of factor right now and you are doing SO well. Last time you said to me that God is helping you be brave. God is good, little man, He is always there for you, and so far you have seen for yourself how God does answer prayer. You are also a TON of fun. Life isn’t dull when you are around and I have never stopped thanking God for you.  Thank you for the joy you bring to our lives!

Happy. Wow, little girl, you’ve brought a whole new level of interesting to our lives. Lately you’ve wanted to be alot more involved in everything from doing the dishes, to laundry, to anything mom is doing. Oh my… Let’s just say you’ve been learning alot lately… The cutest thing that happened this month was one day when I was putting you down for your nap, you said that you wanted to do school (the boys do their school work when you and hopefully your sister nap). So I told you that I’d have a book for your when you woke up. Well you certainly did remember and had a blast starting your first Rod and Staff book (with help from Blondie). In addition, I was asking the boys what a sentence starts with and you were the first one to answer with, “A capital, Mom!”. I didn’t see that coming… Lastly, you got two second molars this month.

Button. Babies are so much fun! This month you started rolling onto your sides a lot. You are able to scootch around in a circle and are pretty impressed with yourself.  Your siblings think it’s pretty impressive… You’ve also found your voice. I caught you getting mad at me and “yelling” at me. Silly girl, I’m on to you… You are also mastering grabbing things with your hands, and you found your feet the last time you had a bath. What a joy children are…

Prophy

Since finding out in August that Blondie has hemophilia, he has had 3 bleeds. Not cool.

Life has been quite the whirlwind of doctors appointments, visits with the physiotherapist and nurses, factor treatments, waiting for DNA testing results, asking questions and doing alot of research, and still having lots of questions…

I feel like I don’t know where to start. Each time he has had a bleed, I’m all business and stay “strong” through the whole process. It seems like I’m doing great and handling things well, until the fact that my little boy has a serious genetic bleeding disorder hits me or he says to me “Mom, I won’t have to get needles when I’m an adult, right?” and I have to tell him the truth (let alone the times the nurses and doctors can’t get a vein and poke him four times. Seriously!??!)

I am struck by how much I have to be grateful for, and I truly am thankful. So thankful that I feel like it’s not okay that I just might be upset about the situation. But the reality is he has hemophilia and that’s a big deal.

When we first found out, my initial response was complete surprise that he has hemophilia, followed by a series of prayers, thanking God is wasn’t cancer (the initial appointments were all through the primary cancer department in the province), and for his hand of protection over Blondie during the last four years.

Now I still don’t really know how I would say we are doing. It is by no means “normal” yet, I don’t know if it ever will be, but we are figuring things out.

There is certainly a grieving process that we’ve been going through and it seems I go through a similar process each time something comes up. He had been doing so well before the diagnosis that I (obviously somewhat naively) hoped and prayed he would rarely injure himself and we would hardly ever need treatment, and we certainly wouldn’t need to go on prophylaxis (preventative treatments) and therefore wouldn’t need to worry about him developing an inhibitor (when your body doesn’t respond to treatments), but then…

…he’s had 3 bleeds in 2 months
…therefore he’s had more treatments
…which increases the risk of an inhibitor
…and is more likely to warrant going on prophylaxis
…which he is now on (though praise God he has not developed an inhibitor)

He is on prophylaxis because he has injured the same knee twice within three weeks, and we want to prevent another bleed in the same joint. There is also talk of doing an MRI of his knees in a few months because his knees appear quite bony (similar to kids with juvenile arthritis) and so there is reason to believe he may have had previous injuries that we weren’t aware of and therefore potentially more damage to his knees.

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In light of everything, I am SO PROUD of my little man. He does not like the needles (don’t really blame him), but he is handling it SO well. He’s been asking a bunch of tough questions and God has been faithful in providing the answers.

We have had some pretty neat conversations and these usually come up at bedtime. Bedtime is such a sweet time to slow down and see what is on your kids’ mind. Over and over I am blown away by what comes up and what their perspectives are on things. After a few bad experiences at the hospital (when he would get poked more than once) Blondie was asking some pretty tough questions. Like, “why do I have to get needles?” , “why do I bleed?”, “I won’t have to get needles when I am an adult, right, Mom?”. It might seem straight forward, but try explaining that to a four year old…

But God is faithful, and he has given us words to speak into Blondie’s life. When I told him he wouldn’t get needles in heaven, such a peace came over him, and God not only spoke to him, but also reminded me once again that I need to have an eternal perspective. I get caught up in the moment that my son has hemophilia, but that does not define him, does not have to limit him, and most certainly does not limit who God is and what he can do through Blondie’s life. Oh, Praise God!

God has used Blondie to teach me an awful lot in the last few months, and I know there is a lot more to come, but I keep finding myself in a place of praise.

Though there is still a ton to of stuff that I feel like I need to work through, and there is still much on my mind, I know that no matter what GOD IS GOOD.

Samaritan’s Purse

For the last few years we have prepared Operation Christmas Child  shoe boxes for Samaritan’s Purse. This years experience was a bit different.

I had read the book “Operation Christmas Child: A Story of Simple Gifts” by Franklin Graham with Donna Lee Toney and was struck by the stories of how God has used these gifts to transform lives.

I was challenged to pray for the children who would be receiving the gifts, to write letters to them, and to involve my children even more in the process.

As a family we went shopping for the gifts, and the kids had so much fun picking out items for the boxes. They, and my husband, picked out stuff that I never would have and I loved their fresh perspective and the joy they expressed in picking out the gifts.

Back home, I let the kids lose and they had a blast packing the boxes, drawing pictures and writing letters.

Once they were in bed, I spent the next few hours repacking and organizing the boxes (I couldn’t believe how long it took!) and praying for the kids, their families, and the communities that would receive the gifts.

If you aren’t familiar with Samaritan’s Purses’ Operation Christmas Child, I would love to encourage you to get a copy and read “Operation Christmas Child: A Story of Simple Gifts” by Franklin Graham with Donna Lee Toney from http://www.samaritanspurse.org/.

I have packed shoe boxes for years and while I certainly hoped, I never realized the extent to which God is using this ministry. Praise God for His faithfulness!!

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Pure and undefiled religion before God and the Father is this: to visit orphans and widows in their trouble, and to keep oneself unspotted from the world. James 1:27 (NKJV)