Monday, December 30, 2013

Milestone Monday: Rolling Over, Feeding and Sitting Up!

Recently, all of a sudden, Princess decided to roll over from her back to her tummy. She'd done it a couple times but last week, the light bulb just went off and she was off and rolling!

This is what she had been doing:

She had just about gotten it. All she had left was that last shoulder. Then she figured it out! 

Then, just randomly, she started grabbing the little puffs we'd been putting on her tray. She's managed to get a few of them to her mouth. So I watched her, and yes, she did have a pincer grasp!

So when we went to the grocery store, we got her Cheerios! (She's special and gets the chocolate ones!) And this little girl may not have a tooth in her mouth, yet she is chewing EVERYTHING up!

And then on Christmas, she did this:

Yep, she sat up all by herself!

Friday, December 27, 2013

Jingle's Final Activities This Year

I can't believe I haven't posted this yet! So here it is!

Jingle has gone back with Santa. Santa came to our house early because Little Man will be spending the night at his father's house. So Jingle got picked up by Santa after he delivered gifts

But since the last update, Jingle has gotten into some things.

For one, he tried to hang from the chandelier in the dining room.

Then, he actually brought Little Man a book: The Polar Express. It was a little above him, but we did things in Playschool about it, so it all worked out.

The next night, Jingle climbed to the top of the bookcase and left a note.

He then got in the candy the next night.

Then, I guess he figured it would be a good idea to lock Little Man in his room. (Yes, that is a baby gate on his door. It's not to keep Little Man in; it's to keep the dogs out of his toys at night.)

Then, the last night he was here, he left them his goodbye letter and a couple of gifts.

Inside were new jammies for both kids to wear to bed, "A Charlie Brown Christmas" DVD and hot cocoa.

Friday, December 20, 2013


Am I really that different than any other person going through a difficult time? I don't think so.

There's a video going around Facebook. It's from a lesbian, Ash Beckham, who is talking about how everyone has a closet that they are in, whether they are gay, getting divorced, or dealing with an illness. The tag line is about how she answers a 4-year-old's question about her being a boy or a girl. But there's a line she says in there about how "It's not harder, it's just HARD." (Here's the whole video.) It really stuck with me. What I'm going through is no harder than what anyone else is going through. It's all hard. What is different is what we do with those hard times. Do we lose our faith? Blame God? Question God's plan? Or do we keep our faith and trust God? I told a friend recently that losing faith is easy. Keeping it is harder. I truly believe this.

People have told me that I must be so strong to handle what I'm going through. That they could never go through all that I have gone through. I usually don't know what to say to that. Maybe because there isn't a short answer. The truth is. You don't know what you can go through until you are there. I never thought I would be a preemie mom. I never thought I would be a heart mom. I never thought I would be a special needs mom. But yet, here I am: a mom to a special needs preemie with a heart condition. I never thought I would be strong enough to deal with 3 weeks in the hospital. I never thought I would be strong enough to handle having a child in the hospital for nearly 3 months. I never thought I would be strong enough to handle having to hold my child down while they got an IV in her or drew blood numerous times. But I am.

There's a lie everyone feeds you: "God won't give you more than you can handle." It's a TOTAL lie. It's nowhere in the Bible. In fact, God routinely gives you MORE than you think you can handle. He does this so that you learn to lean on HIM. He's going to pull you through it, if you trust Him. In life, there will be lots of tests to your faith. It may be a sick child. It may be losing a loved one. It may be a car accident. Think about the book of Job. Job lost EVERYTHING and his friends even mocked him for his faith. But did he lose faith? No. He kept on believing that it was God's plan.

There's a blog entry that was just posted to one of my many support groups. It's about What Not to Say to someone who is dealing with a family member with an illness. It really got me thinking of writing this entry. It's been on my mind for a while, but what this mom said is true. My mom posted something very similar on our CaringBridge journal, except it was specific to a preemie. I may repost it here soon. In my mind, I don't think I'm going through a lot at all. Maybe it's because I see these things as blessings and not a struggle.

When the PHA2 diagnosis gets me down and I don't know what to do about my child having a rare disorder, I remember that things could have been so much worse. I've posted before about why Princess was born premature. I've been thinking about that a lot lately. I know now that Princess's placenta was abnormal and that is why it started tearing away and probably why my water broke early. There's no test right now to find out if the placenta is normal or not. But I don't ask why Princess was born premature. I know why. Princess was born premature because if she wasn't, she wouldn't be here. She NEEDED someone to be watching her blood pressure constantly. The only way that would happen would be if she was born early and in the NICU. Had she not been born early, her heart could have gotten so enlarged with the cardiomyopathy that it would have stopped. Her potassium could have gotten so high that she died. I still worry now, but nothing like those with little or no faith. I know God has her, no matter what happens.

When I'm medicating Princess during the day and I get down on how many medications I'm giving her and how hard it is sometimes, I think about kids like Owen. He just had a heart transplant at 5 years old. He's on like a dozen different medications. Princess has now gotten so good at taking her medication. She opens her mouth like it's food or something. Yes, there are days where she still dribbles nearly the whole thing down her shirt and I know I can't give her any more, but it has gotten better.

I also think about Owen when I think about how many appointments I have to go to and the distance I travel. He and his mom spent MONTHS away from home at Stanford and STILL have to travel there monthly. My two hour drive every so often is nothing. Our appointments have spread out too. I looked back at the calendar and between the time she came home June until now there were some weeks that we went every week to a doctor appointment. It's nothing like that now. Okay, so we are going every month for her Synagis shots, but we can deal with that.

When I the idea of Princess needing therapy came up, I didn't know what to think. I'll be honest, it scared me. But then I think about kids like Tripp. He has a traumatic brain injury from a freak accident of nature and has to go to therapy nearly daily to relearn things he already knew, and he's only 3. Princess needing therapy once a week right now is nothing. And even if, later on, we have to transition to needing PT, OT or Speech and be on an IEP, it's not a big deal. We'll get through it.

When the idea of being a single mom becomes overwhelming I think about Mabel. Mabel is eventually going to die. We all are, but Mabel will go sooner than we will. I think about her mom, who is a single mom to three. Seeing how she is giving her children all that they need and deserve, despite the fact that Mabel is going to one day die, gives me the strength to face one more battle for these two kids of mine.

When everything comes at me at once and I just feel overwhelmed with it all, I think that it could be so much worse than what I am going through now. I lean on God, knowing that He is going to give me the strength I need to get through whatever it is I am going through.

About a week before I left my (ex)-hubby, I turned on Good Morning America. I don't usually get to watch it in the morning and usually forget that it's on even. But that morning, they were premiering the video for Mandisa's "Overcomer." I initially thought of Princess when I heard the song and saw the video and was moved to tears. It wasn't until a few weeks later when the song came on the radio that I realized the song wasn't for Princess. It was for me. God was reminding me about all that I had already overcome not only with Princess but in my own life and that He was going to help get me through this. I broke down in tears in the car. (And am in tears now as I write this.) I'll be writing more about all that I have overcome later, but know that Princess's initial journey is very similar to my own, except her odds were WAY better than mine. That song still resonates with me now, as it has become  my theme song for this period of my life.

This is nothing new. God has given me songs for periods in my life. When Princess was in the hospital and we didn't know what was wrong with her, the song I was given was "We Won't be Shaken" by Building 429. There have been other songs along the way, and I have downloaded them and put them in a playlist for Princess. They are there when I need them. When the insurance issues just become nightmarish. Or the transitional issues with Little Man and him dealing with the separation wear on me. Or I'm just tired of everything and want to curl up into a ball and hide. I know God is there. He's watching over us. We don't need to worry. Losing faith is easy. Keeping it is so much harder. But if you do manage to lean on God through all the tough times, the'll be sunlight on the other side.

I'm reminded of when Jesus walked on water out to the disciples:
Immediately Jesus made the disciples get into the boat and go on ahead of him to the other side, while he dismissed the crowd. After he had dismissed them, he went up on a mountainside by himself to pray. Later that night, he was there alone, and the boat was already a considerable distance from land, buffeted by the waves because the wind was against it.
Shortly before dawn Jesus went out to them, walking on the lake. When the disciples saw him walking on the lake, they were terrified. “It’s a ghost,” they said, and cried out in fear.
But Jesus immediately said to them: “Take courage! It is I. Don’t be afraid.”
“Lord, if it’s you,” Peter replied, “tell me to come to you on the water.”
“Come,” he said.
Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!”
Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?”
And when they climbed into the boat, the wind died down. Then those who were in the boat worshiped him, saying, “Truly you are the Son of God.”                    -- Matthew 14:22-33
 As long as we keep our eyes on the Lord, he will not let us fall. He will quiet the storm and keep our head above whatever stormy waters we are facing.

Wednesday, December 18, 2013

Jingle's Antics This Week

Jingle must have gotten back really late, because we found him under the Keurig waiting for coffee to drop into his mouth.

The next night he must have been really hungry, because he wanted a bowl of Kix.

I guess he wanted to play with Little Man's cars. (Little Man didn't like that too much because he played with the wrong dumper.)

Then he made it snow on Little Man. He really liked that one. We still have "snow" in his room that he plays with.

Unfortunately, Little Man moved Jingle when he went to turn off his night light (Jingle had camped out on his nightstand). So I had to look up The Elf Magical Recovery Kit. But before we could repair Jingle's magic, Little Man had a bad day. He was all defiant and crying after his nap. So he got a letter from Jingle saying that he couldn't hang out that day. The next day, he came back with the magic elf dust. (I missed getting a picture of Jingle with his elf dust from Santa, but this is the letter.)

The next morning Jingle got his Elf Certificate of Health. He also must be missing the North Pole because he spelled Little Man's name out in mini marshmallows and stacked up donuts like snowmen. We are back on track!

Wednesday, December 11, 2013

Snow Day

This past weekend, we got:

Yeah, we got about 4-6 inches of snow. I managed to get pictures of Little Man's outside diggers and dumpers covered in snow. And my car.

Then today, I took Little Man out to play in the snow still left in the front yard. It has really started to melt now, but there's still some up near the house where the yard is in shadow from the house. So here he is walking in his own footprints. He had walked out in it back on Sunday and since we didn't get any more, his "paw prints" were still there. (He has been pretending to be various "Clifford Friends" lately. Think "Clifford The Big Red Dog.")

Then he decided to climb the "hill" of where we shoveled the driveway. And he made it to the top.

And then he stomped it!

After a bit, he went and put his hands in the snow. I was trying for a good Chinese Theatre in Hollywood hand print impression, but of course not! He's only 3!

He decided to go walk up the sidewalk near the front of the house and stomp on the snow that had gathered in the cracks.

We then had a snowball fight. Well, it wasn't really a fight. He doesn't get that. But we threw snowballs back and forth. Oh, and we did something I saw on Pinterest. I took a bucket and his watercolors outside. As we were walking out there, he kept telling me, "But we need water for the paint, Mom! It's not going to work without water!" Well, then we painted watercolors on the snow! He thought that was fun!

Jingle Weekly Round Up

Previously, we had had Randall the Reindeer. He was WAY cheaper than the Elf on the Shelf. Well, through the Big Chaotic Mess, I didn't manage to snag Randall, so we bought Elf this year. His name is Jingle and he showed up the Friday after Thanksgiving.

So his first night we had him, He went to bed in the Kleenex box.

The next thing he did was jump in Little Man's stocking after redecorating over the fireplace with toilet paper.

Then he decided to decorate the tree with Little Man's undies!

He took a ride on the huskies pulling the snowman in the sleigh.

Of course he had to hold baby Jesus from our Nativity set.

And why wouldn't he be riding a reindeer?

Can't wait to see what he does this week!

Monday, December 2, 2013

Milestone Monday: Socks and Sippy Cups

This would have been posted yesterday, but I was still having issues with my photo storage website. I'm hoping it's fixed now!

Welcome to the first Milestone Monday! Princess has been approved for developmental therapy through early intervention and we have written our Individual Family Service Plan (IFSP). So I figured I should keep track of all of these milestones that she's going to be meeting. Some of them may not seem very big to you, but to us, they are a big deal. Something as simple as learning to pull her socks off on her own is cause for celebration!

So this past week, Princess made some pretty big strides!

Yes, she did finally get those socks off her feet!

She also learned to hold her own bottle!

And she held her own sippy cup!

She's rolled over from her back to her tummy a handful of times, and I have yet to be able to catch it. She did it the first time the afternoon after we wrote the IFSP. I think it was because we set it as an outcome we'd like to see her do. She was awake the whole time and she heard everything we said. So I think she went "HA! You just THINK I can't do it!" It was kind of like the day she was born. She went "HA! You just THINK I need this tube to breathe. Let me pull it out and show you!"

Shut-In Saturday Weeks 8 and 9: Holidays

I would have posted last Saturday but it was a little crazy. I would have posted this on this past Saturday, but my photo program kept crashing! Sorry it's so late!

On the 17th was World Prematurity Day. Princess got to wear her purple! My favorite outfit she has right now. It says "God's Precious Gift," of which she is!

Then we got Little Man's husky hat from his dad's house, so of course Princess had to try it on!

And just so you know, this is how she wakes up from just about every nap or in the morning!

And somehow I managed to catch this gem!

Then of course there was this random look she gave me:

And of course we dress her up for church, even though no one but us get to see her in these pretty clothes!

And this next photo was NOT taken on Halloween. She was wearing the shirt because I'm going to get some use out of it!

She figured out what to do with a spoon:

And of course there was Thanksgiving. This shirt is definitely true for her:

And then her first Thanksgiving Dinner: Gerber's pureed Turkey and Rice and Peaches. The only jarred baby food she gets is meats and every so often one of the very few fruits or veggies she can have. Because of the PHA2, she's on a modified low potassium diet. The baby food companies tend to add potassium to almost EVERYTHING! As a result, I have started making the vast majority of her baby food.

And when she had finished:

And the Saturday after Thanksgiving, we decorated the house for Christmas. My mom has this little tiny Christmas tree. So we put it on the drawers next to Princess's high chair and I put her Beads of Courage on it like garland. I got the idea from another Beads of Courage member family.

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