the much awaited, much anticipated, oh-so-wonderful update

The more I put this off…the more I put this off. The longer I take, the more there is that happens which means the more there is to write AND therefore, the more I put it off. You get the idea. Hence, it is time to suck it up, take the time and write “the much awaited, much anticipated, oh-so-wonderful update.”

Hope in a hat

Now, if I can just figure out where to begin.

The last time I updated was in December, and I can’t believe how much has happened and how much Hope has progressed in such a short time. The easiest way to update is to give a rundown of all that she is doing and what has changed.

Can you believe this is the same baby??

Can you believe this is the same baby??

The biggest news came AFTER I first started trying to write this post. I spoke with her neurosurgeon on the phone about the results of an MRI he had done in January. He said that not only is her shunt working fine, but that the scan of her neck showed that she does NOT have the Chiari II malformation! (Read previous post regarding that diagnosis here). If you remember, she almost had a scary decompression surgery back in July to correct it….something she doesn’t have! God is so good!

Hope just had her 9 month check-up (a little late) and weighed in at 16 lbs 2 oz! Her height was 25.5 inches. She is now in the 3rd percentile for both, unless they adjust her age for prematurity. In which case, she is in the 10th percentile for weight! She is getting quite chunky. Adorably chunky! She has now moved totally to a crib because she’s gotten far to big and long for a bassinet – not to mention how much she moves.

We saw the pulmonologist for the first time, and Hope is now taking an inhaled steroid twice a day to improve and heal the lung damage done by repeated aspiration and multiple bouts with pneumonia and bronchitis. Incidentally, she hasn’t had a recurrence of either since starting the steroids. We are also currently weaning her off of oxygen during the day.

The pulmonologist referred us to a cardiologist – the only specialist we hadn’t seen – just to be sure there were not problems there. They did an EKG and an ultrasound, and she got a clean report from them. It’s wonderful to have one specialist we don’t have to revisit.

Hope is doing wonderful in all her therapies. She is reaching, shaking rattles, manipulating toys, and banging blocks. Keep in mind that it takes her more effort and concentration than the average child, but she is doing it. She can now shake her head yes and no – which she find quite amusing to tease us with. Her physical therapist is working on things like kneeling and getting her on all fours. She loves to play, especially with faces and hair.

Working on kneeling

Working on kneeling

Touching my toes!

Touching my toes!

This all fours thing is tough

This all fours thing is tough

The only negative thing about therapy is that her speech therapist had to cease many oral exercises after the last swallow study. She cannot currently do anything that might stimulate her to produce more saliva to aspirate. However, Hope has begun to vocalize sporadically. She squeaks every once in a while to get attention. This is a big deal as it requires her to push air past her airway to make a vocal sound, so she’s learning.

All in all, Hope is doing amazing! If anyone had told me 8 months ago, we’d be where we are now, I don’t know if I would have believed it. She is a constant joy to everyone – so full of smiles and laughs. You can’t help but love her.

While I’m at it. The rest of the family is doing great. The hubs got promoted in November (can’t remember if I shared that) which has been quite tiring, but a financial blessing.

My oldest will be 4 at the end of this month. FOUR! Where did the time go? 3 going on 14 and smart as a whip – with a mouth to go with it! I’m about to start teaching her to read. She’s more than ready. This kid is going to be a world-changer. She could probably school some adults on the Bible. Smart, sassy and sensitive. That’s my Grace.

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Proud big sister

It has also become more and more evident in the last months that my middle child (oh, poor middle child) is a true strong-willed child. Time to read up on some Dr. Dobson again. I don’t know what to do with her. She’s 2, but has no idea she’s not 4 or 5 – as commented on by a random mom at Monkey Joe’s. No ma’am. She has no idea she’s not 5. She’s fearless…which is why it makes it so darn hard to put the fear of God in her. Lol. Oh well, I know one day I’ll be glad she’s so strong-willed. Just when it’s against others and not me. I’ll tell you one thing about her though, she’s a hoot. I said it when she was a baby and couldn’t stop smiling, and I was right. She is going to be She is the clown. Joy is such a joy. Strong-willed, but a joy.

No clue she isn't grown

No clue she isn’t grown

We recently took Joy’s paci away. Don’t judge me. She only still had it when sleeping, and I’ve been a little slack on starting and stopping things with her during this season of our lives. I’ll admit that sometimes I do whatever makes my life easiest, so long as it’s not truly detrimental in the long run. I’ve only just started trying to potty train her, but even that I can’t seem to do full-on. After spending 2 years trying to get it to work with Grace, I just don’t have the drive to try so hard this time, and really, who can blame me for not having the time or sanity to let her run around half-naked and sit in the bathroom with her every 30 minutes? She’ll get it. After everything I tried with her sister, it just had to click for her. I’m hoping it will click for Joy.

As for myself, I have committed to be a contributing writer for a well-established homeschool blog that is becoming a group blog. I’m really excited about this opportunity to work with a great group of writers, learn more about blogging, possibly learning how to improve my own blog, and maybe even supplement our income a bit. I will definitely direct you over there once the revamped blog is launched. It should be in the beginning of April. I have already written my first draft for my first post, and you can be sure I’ll be linking up my posts here. Look for more info to follow.

Before I wrap it up, I have to say, it’s been quite a lovely weekend. My husband was off of work per doctor’s orders because he has the flu and bronchitis. However, he didn’t feel as awful as it sounds. It was, however, his first days off in 3 weeks. These last 2 days have felt more “normal” than any day in quite a long time. We had no nursing help and no therapies (since it’s the weekend). It was just us. Just the 5 of us. We watched movies, at pizza, popcorn and chicken wings, laid around in our jammies, read books. Even with me doing everything AND taking care of Hope’s needs, it felt the closest to “normal” life as I can remember in a very long time. It was nice.

Whew. Update done. That wasn’t as hard as I thought. I mean, it’s 12:30 am, but it wasn’t so hard. Why did I put it off for so long? Sorry if it seems somewhat haphazard and disjointed. It’s late, I’m tired, and people are asking for an update.

Wonder how long it will take to write the next one?

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The blog that started as a facebook post and became a rant

Just so you know, this not an update on Hope. I will do that soon…I hope. Anyway….

I do our taxes. I have since our first year of marriage. No, that’s wrong. Since our first month. We got married in December.

Anyway, I do our taxes, and we don’t do the simple filing. I itemize, so I’ve gotten pretty used to dealing with the tax hoopla.

This year is new.

This is the first year we’ve had enough to file medical expenses.

Whoa. A whole new territory.

Needless to say, I’ve consulted a few people for advice.

I have read the ENTIRE IRS Publication 502 on Medical and Dental expenses…more than once AND spoke with said knowledgeable people. I was still left with some questions because tax documents are always “so clear,” right?.

Here’s the deal. Our electricity bill increased by a very large amount starting right from the time that Hope came home with all her medical equipment. I was led to believe I might be able to deduct some of it as a medical expense. I also needed to know whether the distilled water for her nebulizer and vinegar used to clean her equipment was deductable as well. Not totally crazy right?

With no one else to ask, and on the advice of one of those knowledgeable people, I did the only thing left to do – I called the IRS helpline.

A desperate act, I know.

I called and I waited….

…and waited…

…and filled out other paperwork…

…and waited

…and had a phone conversation with my mom on the other phone…

…on hold for a minimum of 15 MINUTES for a representative in the SPECIFIC area of medical and dental expenses.

Finally, I asked her my question. *sigh of relief* To which she responds, “I’ll need to consult Publication 502. Hold please.”

What?!?! Are you kidding me?! The whole reason I waited 15 minutes was for an EXPERT – someone with definitive answers. If you work for the IRS and are answering calls IN that specific subject area, shouldn’t you be knowledgeable about it?

SHE couldn’t even give me an absolute definite answer – only an answer based on that somewhat vague publication and a couple of ridiculous questions (“Um, is it used to cure a disease or illness?”).

She then, of course, had the audacity to act like I AM STUPID.

Apparently, according to this woman, “Everyone uses electricity and it goes up and down for blah, blah, blah bitty blah…and IT isn’t ‘curing or treating a disease.’ The equipment is, but the electricity is not.” Thank you for clarifying that m’lady.

I tried to ask about the other things, but decided to find those answers elsewhere.

Oh, and don’t even bring up meals while caring for a child in the hospital because “EVERYBODY EATS.” Yep, that’s the answer. They pay for lodging. I guess not everybody sleeps, but everybody eats.

My husband’s response to the story? “Don’t take it personally. She works for the IRS.”

I guess that’s what I get for doing something everybody does NOT do – paying taxes.

Unspeakable Joy

I find it hard to believe that my little one is about to have teeth. Her bottom 2 have been cutting through for a few days.

I also find it hard to believe that she will be 8 months old in a matter of days. It will be 1 year before I know it.

Less than 8 months ago, I worried I wouldn’t have the same feelings for her as I do for my other children because we didn’t have that “oh-so-important” bonding time right after her birth…or for several months for that matter.

I could not have been more wrong.

The way I love her is something I cannot even articulate. The smile that lights up her face every time I pick her up fills me with such joy and often leaves a lump in my throat. I’m so thankful God allowed me to experience the heartache of the last year, so I could enjoy the honor of being mommy to this precious little girl.

I cannot imagine life without our little miracle.

Nor can imagine life without any of my children.

Thank you Lord for the privilege.

Post-op

Hope had G-tube placement surgery yesterday and is doing fine. This means her feeding tube is now directly into her stomach through her side rather than through her nose.

Hope after her surgery.

Hope after her surgery.

Now we can see her pretty little face. The whole thing! No tape and tubes on it.  Apparently, it will also be easier to use and easier to change.

Please continue praying for her recovery. She could come home as early as today, but it’s possible she will be there until tomorrow or later. It depends on how she handles her feedings once they start them back.

Oh, and as you can see, she is over 12 lbs now! Chunky little thing.

Thank you all for your prayers and support!

The Big Day

Today was the day we have been waiting for. After rescheduling and waiting and waiting. Hope finally had her swallow study.

Unfortunately, the study didn’t turn out as we had hoped. I’m trying to look at it positively. We haven’t gone backward. We actually have some more answers to her swallowing and breathing problems even if we didn’t see the progress I wanted to see.

I will endeavor to explain what we found out with non-medical terminology. From what I can decipher from the doctor’s handwriting and Google, it’s called oropharyngeal dysphagia. Basically, that just means she has a swallowing problem – which we already knew.

We were aware from her first swallow study back in May or June that she aspirates when she swallows – meaning that when she swallows, some food goes down her airway instead of her esophagus. What we have now learned is that in addition to that, much of what she swallows is also backing up into her nasal cavity. Almost nothing goes down her esophagus.

This explains her difficulty handling her own secretions and why we have to suction her so frequently.

She can have absolutely NOTHING by mouth. Not that she has been allowed to anyway, but even some of the things the Speech Therapist has used will have to be stopped for now. Aspiration puts her at high risk for pneumonia. We also don’t want to stress or damage the parts that are working properly.

We have a consult tomorrow with Pediatric Surgery to schedule a G-Tube placement. That basically means they will put a hole in the side of her stomach to insert her feeding tube rather than continuing to go down her nose. Continuing to put tubes down her nose and esophagus can potentially exacerbate the problem.

We will also be compressing her feeds – meaning she won’t be on a continuous feed anymore. Thankfully, that means one less thing she will be attached to all the time. She will only be hooked up to the feeding pump during feedings. As she gets bigger and we compress them more, it will free her up a little more…especially once she is fully weaned off of oxygen.

We do greatly appreciate the prayers that went up and continue to go up. I know I was praying through most of the test, but as I told our nurse when we left, God had other plans. I trust Him and look for the blessings in all of this.

Hope also underwent an ultrasound this past Tuesday for her hips. That was a great report! Her hips are NOT displaced as suspected, nor does she need any tendons snipped. The only thing found was that one leg is less developed than the other, but that has been apparent from day one just by looking at them. The orthopedist was quite pleased with those results. As for the prognosis, we will just have to let her grow and develop to find out just what her little legs can do. At her age, it is difficult to measure her ability since she cannot respond to commands yet. Right now, I’m believing she will walk one day. Of course, as our enthusiastic Physical Therapist will tell you, she WILL walk. We won’t accept can’t!

The praise in today’s outcome is that I am not crushed. Yes, I was looking forward to having a big cheering party in the radiology department if she had passed, but that’s okay. If I have learned anything in the last year, it’s not to get discouraged. God is still God. This is just a season, but even if nothing ever changed, I’d still be happy and blessed with this little girl.

Our other 2 princesses are joyfully spending a couple days with their grandparents, and I got to spend lots of time with Hope today…so I call it a good day.

I don’t get to talk about my other two blessings much, so I just wanted to share what my oldest said yesterday. “Mommy, when I grow up, and Joy and Hope…we can go walk in the forest (behind our house) and see deer….and I’ll hold Hope’s hand in case she gets scared.”

I can’t help but brag on this 3 year old, tender, sweetheart of a girl. Grace knows just how to melt my heart. I cannot begin to tell the joy it gives me to see the love the 2 oldest have for each other and for their little sister. I can’t wait to see the relationship that develops between these 3 special sisters. It will be a beautiful thing to watch.

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There is surely a future hope for you, and your hope will not be cut off. ~ Proverbs 23:18

As you know, we consider blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about.
The Lord is full of compassion and mercy. ~ James 5:11

Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, O people; pour out your hearts to him, for God is our refuge. ~ Psalm 62:5-8

For Your Viewing Pleasure

Just a quick post to share a few videos and show just how much our little Hope is improving.

Here she is laughing with her Early Intervention Coordinator with her nurse and I looking on joyfully.

Reaching for toys and such is something all of her therapists have been working on for several months, and just this past week, she finally got it. You can just see the determination on her face and the joy when she gets it and smiles up at her physical therapist. We were so excited!

Keep Hope in your prayers this week as she will have a swallow study on Wednesday to determine if she’s ready to handle food by mouth. If so, it will be a slow weaning process, but a big, exciting step nonetheless.

Mercies in Disguise

It has been 3 months since our last hospital stay – *deep sigh of relief*- and our little chunker is now up to a whopping 10 and a half pounds! Now that some of the clouds have lifted, so to speak, I can look back over the last months and see God’s hand at work.

I read a blog post last night that resonated with me (surprise, right? I’m always getting inspired by other people’s writing). Though she writes about God seeing them through Cancer, what she had to share was exactly what I’ve said over and over (or thought if I haven’t said it). She writes:

Not only did God provide for our physical needs, He also provided for our emotional needs. Before cancer invaded our lives, I’d look at people going through difficult situations and think, “Wow, they are so strong. I wonder how they’re doing it?” 

Now, insert Hope’s various medical issues instead of Cancer and you’re talking about us.

The funny thing is, we’re now the people others refer to when they say that.

I cannot begin to tell you how many times I’ve heard, “I don’t know how you do it. I could never do what you’re doing.” To which I think, “Neither can I.”

And I can’t.

It is not me. It is Christ in me. It is his strength in me.

The blogger goes on:

But as we walked through cancer, the following  verses became very real to me.

For we do not have a high priest who is unable to sympathize with our weaknesses, but One who has been tested in every way as we are, yet without sin. Therefore, let us approach the throne of grace with boldness, so that we may receive mercy and find grace to help us at the proper time. ~ Hebrews 4:15, 16

Prior to my husband’s diagnosis, I didn’t have that strength, nor did I need it, but God provided it at the proper time.

God provided for me at the proper time.

To every person who thinks they could never do what I have done, or endure what I have endured – you are right. YOU cannot.

But Jesus can.

He has. He will – at the proper time.

Believe me. One year ago, I could never have imagined where this journey would lead, but I am thankful for where I am. Where we are.

Don’t get me wrong. I have prayed, and prayed, and prayed for my child. The desire of my heart has been and is for her total healing, and it hurts that my child has had to suffer what she has. However, I would NOT give up what I have seen, heard and experienced of my God.

There were things I believed about God. Now I know them.

I believed He was my provider. Now I know He is.

I believed He was my comforter. Now I know He is.

I believed He was my healer. Now I know He is.

I have learned how weak I am AND just how strong He is.

I have learned just how small I am AND how big He is.

I have learned that with God, I can endure far more than I thought possible.

I have learned that the Lord has made me far more capable than I imagined. I have also learned that I still have a long way to go.

I am thankful that He chose me for this – that He is taking the time to refine me and build my character. That He sees something worth building.

As one of my current favorite songs – which has become my battle cry of sorts – says, “You hear each spoken need. Yet love us way too much to give us lesser things.”

I can truthfully say, just as my fellow blogger did, that while I wouldn’t wish any of this on my worst enemy, I wouldn’t trade the experience and the lessons I have learned for the world. I, too, feel like Job who after coming out of the storm of his life declared,

My ears had heard of you but now my eyes have seen you. Job 42:5

As one of my current favorite songs – which has become my battle cry of sorts – says, “You hear each spoken need. Yet love us way too much to give us lesser things.”

Thank you for hearing our spoken needs, but for knowing our deeper need. Our need to know you – not to just hear of you, but to see you.

Thank you Lord for the trials of this life. Thank you for your mercies in disguise.

Blog credit: http://www.thebettermom.com/2012/11/he-will-meet-you-in-the-storm/

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Here’s the song if you’d like to hear it. Blessings by Laura Story. One of these days, I’ll get around to singing it.