Year End Round Up for Princess

Here is our Year End Round Up for 2015:

Trips to Sac: 6

Trips to YC: 2

Therapy Sessions: 50+ -- Princess receives weekly therapy, plus we added 3 more therapists, 1 though is redundant.

Dr. Appointments:  A LOT!

Specialists Seen: 4 -- We added 1 new one this year.

Ultrasounds: 2, thankfully done the same day!

ER Trips: 1!!!!!!! Hooray!!!!!!!!

New Diagnoses:  2

Hospitalizations: 0!!!!!!!!!

Highlights:

Princess graduated from NICU Follow-Up Clinic!

She was diagnosed with Cerebral Palsy (CP) and Sensory Processing Disorder (SPD).

After her next birthday, we will no longer be seeing J, our developmental therapist. We also will no longer be seeing M, the OT through the county special ed department. She will no longer qualify to have her gym class paid for, but we will likely continue it, as it's only $7, we just probably won't be going as frequently. But we will be continuing with the medical based therapy with L, the physical therapist and M, the occupational therapist.

On Monday, she's scheduled for an MRI of her brain. It's to "verify" the CP diagnosis. I'm not sure if we're going to see anything on it or not, but it's more to make sure the insurance doesn't stop her services.

Also coming up in the next few months, the school district and regional center will be assessing her to see if she falls within their range to receive services. It's likely that she won't qualify except for maybe school based OT for the sensory issues, since the medical unit doesn't deal with them. Also coming up, we make the first quarter rounds with all the docs. Some we only see once a year (Dr. M and Dr. R), some we see twice a year (Dr. K and Dr. D), and then we see Dr. H quarterly.

But God continues to watch out for this little girl. At our last PT visit with L, she said that they would like Princess to be seen on their "clinic" days. I'm not entirely sure all that goes on, but I do know that a medical doctor comes in and we meet with her therapy team. It's every other month. Well, it turns out that Dr. D from Shriners is the doctor that comes to the location Princess is being seen at! So it means that we'll be able to get additional therapy, any medical adaptive devices, or other services taken care of much quicker than having to wait to see Dr. D at her bi-annual appointment.

So all in all, 2015 was a good year for Princess. We are two years out of the hospital and hope to stay that way! She's in a preschool that she enjoys and works well for her not only socially and academically, but also with all of her issues. And pretty soon, she'll be 3. It's hard to believe that this little tiny tyke is going to be three years old soon. She's such a warrior.

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GUEST POST: MeMe Tells About Princess's New Diagnosis

This post is written by Little Man and Princess's grandmother, MeMe. She is my mother. On Friday, Princess was given a diagnosis of Cerebral Palsy (CP) by Dr. D at Shriner's. This is MeMe's words about it. She's suspected all along that Princess had CP, we just had to get past the "it's a preemie thing" for anyone to listen.

I’ve had people ask me in the few days since Princess’s diagnosis of Cerebral Palsy, why it was suspected, she seems so ‘normal’. I thought I’d ask to do a guest post on her blog to tell you. Perhaps it will help someone else as well.

As you may know, Princess was a 28 week preemie, just like her mother before her. I brought her mother home when she was just 6 weeks old and weighed a mere 3 lbs. I have some familiarity of preemies. I noticed within the first 3 or 4 times that I saw Princess that something wasn’t ‘right’. When she was in her incubator, and she would move around, her little legs and arms would twitch, especially when it was purposeful movement.  If it was a reflex, for example, you tickled her foot, there was no twitching. But if she was stretching, she would twitch.  Her eyes would also flutter – her eye balls themselves.  I was told by the NICU nurses that this was a ‘normal’ preemie thing.

When Princess came home and then came up to live with us with her mother and brother, I continued to notice the twitching of the legs and arms, but less so with her eyes. What I began to notice however, was an issue with fabrics. Princess would only sleep in her bed if the sheet was soft – like flannel or later on fleece. While in the pack n play, it was easy to put a flannel receiving blanket under her, so she could ‘touch’ the flannel with her face, or whatever body part was unclothed. Later when we moved her to a crib, it became harder, as she moved more, to keep the flannel under her and as a result, she ended up sleeping most nights with her mother, on flannel sheets – that is until I made a connection and found a fleece sheet.

When Princess was learning to reach for things she wouldn’t cross her left hand over her midline. Meaning if you offered the toy at the middle of her body, she would never reach for it with her left hand, only her right. If I restrained her right hand, she would use her left, but then her arm muscles would twitch. When I pointed this out to the Developmental Therapist, again I was told – ‘normal’ for a preemie. Ummm, no.

Princess’s mother was faithful in doing the exercises prescribed and even made a game out of them – toes to the nose, bicycle legs, etc.  I would often sit and watch and I noticed that Princess seemed to have normal flexibility on her right side, but her left side seemed stiff to watch – harder to move, if you will.

It was about at this time, maybe 6-8 months of age, that we noticed loud noises bothered her. Although totally normal for a baby to startle when there was a loud noise, it’s not normal for a baby to get a 1-2 minute shutdown, where you could physically see by her face, which would go flaccid, that something wasn’t connecting – she still does this today. If the noise continued, just like today, this 6-8 month old baby would have a screaming fit and be totally inconsolable. She still does this today. We know now that it is sensory issues caused by the brain damage called Cerebral Palsy.

As Princess grew, it became apparent that she was going to be behind on those milestones you associate with a baby. She was always right on the cusp of the different therapists/doctors being concerned.  If they said she should be sitting up by 9 months or we will have to look into things, she would sit up unsupported at 9 months 4 days. It was the same with crawling and walking, she was always right on that cusp of creating concern. What I did notice however, was that as she learned to stand and/or you put her in her walker, her left leg would seem to collapse on her. When she was cruising the furniture, she fell many, many times and 95% of those times, it was because her left leg just gave out. I quit mentioning my concerns, as they were either met with ‘it’s normal’ or ‘they don’t seem concerned’. But I knew something wasn’t right.

Meanwhile, what we now know are sensory issues, continued and continued to seemingly get worse. Noise bothered her, but also being barefoot and having her feet touch the grass, caused a complete meltdown.

Once Princess started walking, she began toeing in pretty significantly on her left foot. It raised the concern of her Developmental Therapist and later, the NICU follow-up clinic, which ended up referring her to Shriners for an evaluation. I was able to accompany the kids to Shriners  for that evaluation and that’s when we first heard that her reflexes on her left leg and arm were a little too easy to solicit.  I asked the Doctor, why??  His response stunned me into silence….’it could be Cerebral Palsy, but we will have her come back in 6 months, because maybe it’s a prematurity thing with walking’.

I began to research, something I have always loved to do – everything and anything concerning Cerebral Palsy – scholarly articles, the various organizations’ websites, blogs about other children with CP.  I learned enough to know that Sensory Processing Disorder often went along with Left Hemiplegia – seems the right side of the brain is where many of our senses are processed. I also watched Princess – closely…she still fell A LOT. Many times it’s because her left leg just gives out. She also started with leg pain – that made her cry.  At times she would tell us she couldn’t move her leg and it would feel to just be so tense and tight. Rubbing would help. Sensory-wise, as she was exposed to more things – story time at the library, Sunday school at church, etc. it became apparent that too many people created a sensory overload and Princess would shut down.  If not allowed to retreat to give her senses a chance to catch up, she would have a meltdown – often resulting in an inconsolable toddler for 2 or more hours.

Meanwhile, Princess’s mother was catching up to my thoughts and we had many discussions of what this meant and I sent her websites to read and explore.  We both became convinced that Princess had Mild Cerebral Palsy.  her mother consulted with the therapists, who couldn’t agree with us– as they cannot offer a diagnosis, but they would say ‘there is a problem’. Princess needs help and as she nears her third birthday, she will be timed out of her therapies unless we had a diagnosis that allowed them to continue. I told her mother to ask the therapists if they would write a letter to Shriners describing what they saw in Princess. The therapists did, very willingly, as they recognized that this child needs continued help and support.

This brings us to the visit to Shriners on Friday.  I wasn’t able to go, but as I understand it, once the doctor examined Princess, watched her walk and read the therapists' letters, he immediately came out with Left Hemiplegia. I think he knew, like I knew, all along, but wanted to believe ‘it was a preemie’ thing. It sounds like this doctor is going to be our biggest advocate going forward and I am so glad. He opted not to brace her left foot/leg at this time, as he feels there would be minimal compliance at this age, which I have to agree with – so we are going to see what progress we can make with Physical Therapy and we will see in 6 months where we are.

This still doesn’t answer the question of ‘how or when did this happen’. Truly we don’t know. It could have happened when she was born and the doctors took 4 or 5 minutes to get surfactant in her lungs and intubated, it could have happened when she went acidotic the 2 or 3 times, or when she developed the milk protein allergy. Bottom line is we don’t know when the brain damage occurred, we only know that it did and it is no one’s fault.  In the process of saving her life, Princess’s brain was injured.  Thankfully, it is a mild injury, as it could have been so much worse. It is NOT caused by her rare genetic condition, PHA2, as there is no incidence of it being even remotely related. It doesn’t matter at this point, how Princess’s brain got injured, it did and now we will find therapies that will help her become everything she was meant to be.

So where do we go from here?  This is a listing of what we have ordered, what we have done, or what we have plans to try:

• We currently have orders for Physical Therapy and Occupational Therapy. This will either be done by our Regional Center, whom we are already connected with, or the school district or the insurance.  It’s undetermined at this point who it will be through – but we have orders for it and I will make sure it happens.
• We have Princess in a Co-Op Preschool and for now, even though we are paying for it, she will stay there. Princess loves her school, loves her teacher and the classes are small and the director has a daughter with sensory issues, so she understands. Not to mention, she welcomes the therapists at the school. Her mom is not only allowed at the school, but because it is a co-op, she is required as a part of the membership, to be a ‘helper’ once a week. This allows her to see how Princess is doing first hand.
• At the recommendation of Princess’s Occupational Therapist and as a part of that therapy, Princess is going to ‘Gym’ once a week.  This is for large motor movement, which is so important for both the Left Hemiplegia and the sensory issues.
• We have started Aromatherapy with some mixed results. Our DoTerra consultant is wonderful. Currently ‘Tinky Nee’ gets frequent ‘showers of blue water’ which is Wild Orange Oil and a little water. This seems to keep Princess calm and has kept the meltdowns mostly at bay. We also find that Wild Orange oil will abate a meltdown. A small drop under Princess's nose allows her senses to refocus when in the midst of a meltdown. DoTerra’s blend called ‘Balance’ is used prior to school and gym and seems to help with the shutdowns and thus prevents meltdowns as well. We are working on a blend or oil for bedtime, as this girl does not like to go to sleep.
• We are going to look into therapeutic horseback riding and try to either get a referral or private pay for this.
• We have gotten an exercise trampoline, with a handle to help with large muscle coordination and to help Princess with learning to jump, something she still hasn’t mastered.
• We have also started back using her exercise ball to help keep her core strong.
• We have started the brushing and joint compression techniques and are awaiting more instruction. This is for the sensory issues.
• We are waiting for other suggestions, exercises, therapies that we can implement. 
• We are depending on God to continue to carry us, showing us what needs to be done to help this precious child of his.

We welcome your thoughts, prayers and suggestions on our journey.

Don't tell me you're sorry

If I meet you and you eventually find out that my daughter has a rare disease, please don't tell me you're sorry. We don't need your pity.

Princess leads an extremely normal life, with a few exceptions. Yes, we seem to have months were all we do are appointments. Yes, it can be difficult to tell her "no" when she wants something like ketchup. Sure she takes medication every day, but in this day and age, who doesn't?

Currently, she is on an IFSP. We don't know as of yet if she will transition to an IEP. We do know that there will likely be a 504 plan involved in her schooling. This is more for her safety than for anything else. It needs to be documented what she cannot have so that everyone knows.

Yes, she wears a medic-alert bracelet. I take no pride in this. It is simply to keep her safe, especially when I can't be there to do all the talking and telling of her medical history.

As for long term, we don't know what the future holds. We don't know if there will be more medications added. We don't know if there will ever be a "cure." We don't know if she'll ever be able to manage her disease without medication. We don't know for sure if she won't pass this on to her children. All we can do is take it day by day and see where that takes us.

The things I do know is that we are VERY fortunate. Princess was diagnosed within 5 months of symptoms presenting, being symptoms technically presented at birth. Most people with rare diseases will go for YEARS without a diagnosis. Princess's disease actually has a treatment. Many rare diseases don't. We know that this is God's Will for Princess and we will continue to follow whatever path is laid before us.

Princess will lead as normal a life as possible. She will have to know that she can't have certain foods and that other foods she can't binge on them. But otherwise, she's going to grow up knowing that she can do anything she wants!

As for Rare Disease Day/Month, well, we will probably always have our jeans and/or tee shirts and our ribbons on the last day of February. We may or may not do something in the schools when Princess gets there. That will depend upon her. We may or may not do the (Virtual) Denim Dash. We will just have to see what comes. The same goes for November for Prematurity awareness and the March for Babies. Only time will tell.

Strength...

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.

What a Difference a Year Makes

One year ago this week, this happened:

I had done two tests the week before and had gotten nothing. But, after my mom insisted, I did a third one a week later. This one was positive. I was shocked! We had literally just started trying for a second baby.

When I found out, I kept my mouth shut about it for a while. My main reason was I was actually not very happy that I was pregnant. I spent many a day arguing with God about the timing. How could this be the right time for me to be pregnant? After about a week of not wanting to be pregnant again, I finally accepted the fact that we were going to have a second baby. Whatever I had planned wasn't going to happen the way I wanted it to. I realized that it wasn't my plan to begin with. This was what God wanted, so I was going to carry this baby and do the best I could.

Little did I know that 5 months later, almost to the day, my water would break. At that point, there were more urgent prayers, this time to save my little girl. I rushed off to the ER and they transferred me two hours to the hospital with a level 3 NICU, knowing that the baby was going to be born early.

Every day in the hospital, I prayed for the strength to be able to last just one more day. I had several times where I couldn't see the monitor and they couldn't turn it up really loud because I was in a shared room. Those times were so scary because I didn't know how things were going. All I could do would be to lay there and stare out the window, praying that everything would be okay.

For some reason, when I started bleeding on the 27th, I wasn't scared. When the nurses started to congregate and weigh how much blood I was losing, there was no fear. I knew then that Princess was going to be born early. The only thing I could do at that point was pray. After they took her via c-section and rushed her out of the room to stabilize her, praying was the only thing left.

When they wheeled me into the NICU to see her, I don't think I actually saw much. I remember touching her little hand and I think I told her to be strong, not that she needed telling. She was so tiny, yet in that moment I wasn't scared. I wasn't afraid that I was going to be the mom of this little one. I just knew that things were going to be okay.

As the weeks past, and she grew bigger and strong, I knew I wasn't alone,. God was with us the whole time. When she came home on prescription formula because she could no longer tolerate the breast milk, I was fine with it. It was as if God had said, "You did what you needed to do." I had never really intended to breastfeed Princess, that is, until she was born premature and I was told I should pump as long as she was in the hospital. That became my goal.

She came home still having issues with choking. Not even a week later, we were back in the hospital dealing with the last of the milk allergy. We were sent home 24 hours later. One week later, we were back at the hospital, this time in PICU because of a heart condition. At that time I didn't know how I was going to be strong enough to be a heart momma. And yet, through it all, God has given me the strength to do that.

Now, she has been diagnosed with a rare disease, PHA2. It means all kinds of things right now: blood work, adjusting meds, food restrictions. And yet at the time she was diagnosed, I didn't know how I was going to do it. Yet through it all, God has been there. It has been hard trusting Him in times when I had no clue what was going to happen.

And even now, as I traverse this chasm of divorce and single parenthood, in the moment's when I think that I can't do this on my own, I am reminded that I am not doing this on my own. God is there. He's given me the strength to overcome insurmountable odds, so there is no reason I cannot do this now. I will overcome whatever life throws at me. I won't do it alone. God is always with me.

Trusting God is Scary

I've had a few times where I have had to trust God with things. These times have never been easy. In fact, they have been some of the scariest times of my life.

The first time I put my total trust in God was when I was looking for a teaching job. My best friend at the time had just gotten a job teaching 4th grade at a school district in the desert. As I was headed off to my favorite moping spot, which happened to be the fast food restaurant where I worked at the time, I happened to catch just part of a Backstreet Boys song. The song was "Just Want You to Know," and the following lines jumped out at me:

All the doors are closing, I'm tryin' to move ahead

And deep inside I wish it's me instead

For some reason those words just resonated with me at that moment. Right then, I prayed to God for Him to use me where He needed me. The next day, I got a phone call from the principal at the same school my friend had gotten hired at. We talked and she offered me a fifth grade position. This was not an ideal position for me, and I spent many days and nights praying about it. Then I got put into a third grade position for the next school year. I stayed there for four years teaching third grade.

During that time, I reconnected with my husband and we got married. I became pregnant and gave birth to Little Man. During my maternity leave, I began praying about the difficult situation I was in at work. Things had gone from good to bad in a matter of years. I was looking for a way out. God provided that way. 

I wanted to move back home, back to the area where my family was living, But I couldn't get a teaching job in that area. This was in the depths of the recession so teaching jobs were slim. So I had to take a huge leap of faith. I left my job at the end of the school year and my little family moved into a house that was owned by my father-in-law. I didn't know where the money was going to come from so I had been saving for a while. I had managed to save about $10,000. That was able to sustain us for the time while Hubby looked for work.

During this time of uncertainty, the Lord gave me Scripture to know that everything would work out. The Scripture was:

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them.Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?

“And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

-- Matthew 6:25-34

I was hoping to be a stay-at-home-mom. I only lasted about a year or so. By then, I NEEDED to work. I was going stir crazy! So I got a job at a local library.

After a year, I got pregnant. 26 weeks later my water broke and almost 3 weeks after that, Princess was born. I had to entirely trust in God as I left her there. I had to trust the nurses and doctors to take care of her while I was at home. It was very difficult at times, but I knew God had her in His arms.

God granted me several songs to help me through the time with Princess. One of which was "Every Good Thing" by The Afters. The second of which, which has become our anthem and where the title of this blog came from is "We Won't Be Shaken" by Building 429.

Now, 6 months after Princess was born, I have to trust God yet again. I have taken the kids and left Hubby. I have no job and can't exactly get one because Princess is so special. Thankfully my mom has given us a place to stay while I get back on my feet and figure out what we are going to do. I had been debating this for a long time and it's only now that God has given me the strength and knowledge to know that I can do this. I can raise two kids by myself. I won't be alone. I'll probably have another post on this later as he has actually filled a dissolution of marriage (divorce).

But yet again, the Lord is with us on this. He has given me another song "Help Me Find It" by Sidewalk Prophets. In all this our faith remains unshakable. We will trust in God and He will lead us through it.

God's Plan Being Revealed

Today, we went to the endocrinologist. This was on the recommendation of the nephrologist. Well, we got a diagnosis for Princess: pseudohypoaldosteronism type 2 (PHA2).

Here's what the National Institute of Health's Genetics Home Reference says about it:

Pseudohypoaldosteronism type 2 (PHA2) is a condition characterized by problems regulating the amount of sodium and potassium in the body. Sodium and potassium are important in the control of blood pressure, and their regulation occurs primarily in the kidneys.

People with PHA2 have high blood pressure (hypertension) and high levels of potassium in their blood (hyperkalemia) despite having normal kidney function (normal glomerular filtration rate). The age of onset of the condition is variable and difficult to pinpoint; some affected individuals are diagnosed in infancy or childhood, and others are diagnosed in adulthood. Hyperkalemia usually occurs first, and hypertension develops later in life. Affected individuals may also have high levels of chloride (hyperchloremia) or acid (metabolic acidosis) in their blood. People with hyperkalemia, hyperchloremia, and metabolic acidosis can have nonspecific symptoms like nausea, vomiting, extreme tiredness (fatigue), and muscle weakness. (website)

So this explains everything. We knew the hypertension was causing the damage to the heart. The treatment for the PHA2 is one of the medications she is already on. She's on such a minuscule dose though, so I suspect we will be going to a therapeutic dose of it probably on Tuesday when we see Dr. K.

This condition is rare! They're really not sure of the prevalence of it. My mom has been doing research on it and has found things about it that were published LAST YEAR! They've known about it for about 35 years, but are just starting to find out the genetic background for it. There's probably going to be more that's found out about it in the coming years as it is related to hypertension and there is money going to hypertension research.

Anyway, why did I title this "God's Plan Being Revealed"? Well, had Princess not been born premature we may never have known about this at all. She could have died of SIDS that would have really been the cardiomyopathy, the hypertension, a heart attack, a stroke, the hyperkalemia, anything really. But instead, God saw fit to have her born premature so that the doctors were watching things like her blood pressure and her renal function right from the moment she was born. She has already brought Glory to His Name. So no matter what happens, it's okay. No matter what issues she has, we'll be fine. She may not be that tall, but that's okay. She may always have to be on medication, but we'll live. By all means, it could be a whole lot worse than what it is. At least this disorder is treatable. We'll just continue to take it day by day and see what happens.

Yeah, I was totally shell-shocked to have this huge phrase thrown at me. And yeah, I had a moment of "this poor child is going to have to be on medication the rest of her life." But my God is with us and He will see us through. No matter what happens, we're going to be okay.