Pretty sunsets, needle-induced tears and large stuffed animals

Did I tell you that I have a new photo assistant? He's a super hard worker, he has a great creative eye and he can easily make people laugh. His name is Sammy! I brought him with me to a photo shoot last weekend because he was wanting to earn some money (this boy is so responsible with money). He took his job seriously and worked hard. He's super awesome on the other side of the camera, as well!

We have been staying at a new campground this week and it's been an experience. It's beautiful when you look past the other RV-homes! We've seen some beautiful sunrises and sunsets.

Buddy has been nutty since his surgery a few weeks ago. I've threatened to give him away a handful of times, which always results in the boys begging me to change my mind. We love our dog, we love our dog, we love our dog.....

On Tuesday I brought Elijah to Children's for a blood draw (ordered by his new Genetics doctor) to take a more thorough look at his genes and possible resulting genetic disorders. This is something we've done before but detections can be made that weren't possible waaaaay back in 2008. E hasn't had a blood draw in a while, so I didn't know how it would go. He was anxious leading up to it, but super brave through it. I saw the needle go in and the nurse began digging for the vein. I know how this feels. It's awful! Elijah began BEGGING her to please take it out, please stop hurting me, as tears streamed down his face. All I could do was hold his shoulders tightly, tuck my head behind his back, pray and of course cry. It was minor in the grand scheme of pains he has endured, but it was awful. Maybe because he's been through so much, I could barely handle it. He bounced right off the lab bench and smiled after the band-aid had been placed on his arm, but my tears wouldn't stop. I cried all the way to the elevator, through the hospital, to the parking lot and halfway back home. Elijah kept reminding me that he was fine, that sweet boy. Oh, I also cried through the entire trip to the hospital gift shop (which I partially blocked out), where I purchased two large and expensive pillow pets for E and S. Watching my boy endure pain = new stuffed animals! :)

I will be curious about these results. There is apparently more thorough testing that can be done, but our insurance won't cover it at this point. Hopefully soon!

Monday is Elijah's 6-month heart check-up with Dr. G. We always approach this appointment with trepidation, as we never know what to expect. We've had a good streak, so I'm hoping it'll continue!

We head back to Dan's parents' house tomorrow until we close on our house. We are all super excited and so ready to have a home larger than 200 square feet. We are ITCHING to get in and get settled.

Thanks for peeking in!

State Fair 2016, dr updates and new digs!

Elijah's tummy has not been the same since the testing we had done at Children's last week. Tummy troubles have kept him home from school Friday and today. Things were bad Friday, better Saturday and Sunday and again at 3:00 this morning he was throwing up. The doctor we saw today thought it was a virus that has worsened with sugar. Today I didn't let him have a single bit of sugar and he's been so much better. Praying for a better day and SCHOOL tomorrow!

Yesterday he seemed well enough to make our yearly State Fair trip and he did great all day (uhh...till his began digesting the greasy, sugary food). We hit all our favorite spots, plus some. Pics are below!

E had an appointment with a Genetics doctor this morning. It's one that I'd scheduled earlier in the summer at the suggestion of Dr. M, our wonderful developmental ped. We haven't seen genetics since 2009 when Elijah was two and at that point they had done extensive testing and hadn't found an underlying issue for his congenital anomalies. Dr. M thought it would be worth another visit, seven years later. Advances have been made in science and other anomalies have popped up with him since 2009. Dr. S agrees with me that there is most likely an underlying genetic reason for everything. We will do a few in-depth tests in the next couple weeks. The REALLY in-depth tests are super expensive and aren't yet covered by our insurance, but the hope is that within the next year they will be. What is the point of doing this testing, you ask? Good question! If we do find a genetic underlying cause for his congenital issues, then we would know for other things to look out for (organs to keep an eye on, for example).

One of my weaknesses happens to be falling into pits of fear and becoming totally consumed by it. There was a two-hour period of time today when I fought really hard to stay out of that pit. Elijah's vomiting has worried me and then his blood pressure at this morning's appointment was 135/90 (!!). After that he got a BAD headache that lasted nearly an hour. He gets these occasionally, but they've never been so intense or lasted so long. I wrapped my arms around my writhing boy and cried and prayed so hard for relief for him. We thought the headaches could be related to his spinal cord retethering (part of last week's testing), but those preliminary results show no retether (both good and bad news). The high blood pressure is likely because of this little tummy bug as well as some mild dehydration (conferred with Dr. G's nurse about this, just to settle my nerves).

All of these things pressed fear down hard on me today. I had a moment at Appointment #2 as I stared down at Elijah's flip-flops while he was being weighed for the second time. There was a moment of clarity when I realized: I DO NOT have to take on this worry! My job is to take care of my boy and I've definitely got that under control. There's someone else shouldering the worry and it's so easy to forget about that and become wrapped up in total fear. We go in and out of these cycles of medical worry and unexplained symptoms and in the end they stretch but also strengthen us. 

Saving the best news for last, we very quickly became home owners over the weekend! The third house we looked at was THE ONE. All four of us loved it instantly. It's spacious, sits in a quiet cul-de-sac, has a huge fenced-in yard, space for our RV, a detached building that can be used for an art/photo studio and even a POOL! We placed an offer a few hours after viewing it and a few hours after that the offer was accepted! The house is on the older side, so we are praying for a good inspection on Wednesday and then we'll be in the clear. We're super excited! We'll move in mid-October.

Thanks for peeking in!

Normalnormalnormalnormalnormalnormal

I just talked to a nurse who works with Elijah's genetics doctor and the results from all of the torturous testing from last week came back NORMAL!!! I cried a little bit after I hung up. I'm getting pretty good at the Relief Crying.

Here are the things that have been ruled out by this most recent testing:

- He does not have mucopolysaccharidosis (MPS) disease. MPS is a genetic disease caused by the body's inability to produce specific enzymes, which would cause cells in the body to not form properly which would cause serious damage to the body. No need to go on because it was ruled out!

- His growth hormone levels are normal.

- His bones all have normal formation. In other words, he is not a little person (or any form of that) like his ENT doctor thought he might be. This is the second time this very doctor has scared us with unresearched and incorrect thoughts.

THANK YOU, GOD!

So, in short (ha!), we just have a short little boy. Like mother like son, right?

Let sleeping dogs lie (i.e., let happy little boys be happy little boys)

Sighing hugely.

Dan and I took Elijah to see his genetics doctor this morning for a follow-up visit. We hadn't seen her since April, so we caught her up on all that has happened over the past few months. Elijah's ENT doctor had spoken with her since he saw Elijah in his office last week and he shared some concerns with her. His ENT doc feels that Elijah might be some form of a "little person" based on his short arms, big head and short stature. His genetics doc disagrees with him. She thinks that although Elijah is indeed a very short person, he does not look disproportionate.

She wants to run three more tests. A urine test to check...I honestly can't remember. A blood test to check his growth hormone and an xray to look at his long bones to rule out little person-related stuff.

After these tests, for crying out loud, LET'S LEAVE THIS KID ALONE! And she agrees with that. Let's allow him to grow and develop without all of the stress of this constant testing. And to be honest, there really isn't much left to look at.

She does feel that she is "missing something." That there is something to explain Elijah's anomalies that we just haven't figured out yet. Who knows. Maybe there is, maybe there isn't. And if there is, I know that discovering what exactly that whatever is, could possibly help us to understand Elijah better. For now, though, I just want him to enjoy life and I want to allow him to be as doctor- and hospital-free as possible. Heart stuff is on the horizon, so a break before then would be nice. Dan will take Elijah back to the hospital on Monday for the three tests I listed above. After that, I'm putting my foot down! We are done with tests for a while.

After the appointment this morning we had a very tearful drop-off at daycare. It was pretty awful, complete with gigantic tears and hiccupy cries. If Elijah had any say, he would spend his time with only Mommy and Daddy, 24 hours a day, 7 days a week. He has regressed socially quite a bit since his surgery in June, so we have been pushing Elijah a bit in that area. By "pushing" I mean taking him to daycare almost every weekday so he gets used to being around other people regularly. He is definitely a kid who needs a little social "pushing." As a child I was like this as well (to a much greater degree), so the apple doesn't fall far from the tree!

We have a super fun weekend ahead of us! We get to see my dad and stepmom and many other family members on my dad's side. Elijah is sooo excited to play trucks with "Amps" (Gramps) and to sing songs with Grammie.

Genetics

I wanted to share the good news quick! The microarray that was sent off to the lab to check Elijah's genes came back COMPLETELY NORMAL! Of course we would love him to pieces no matter what, but this news makes me very happy.

His geneticist has just one more thing she wants to do. She had taken a few photos of the sweet Elijah face when we were in her office in March. She wants to show those pictures to her colleagues to see if they are able to notice anything recognizable in his features that could tie him to a syndrome. If not, then there is really nothing more we will need from her.

She does want to see us back in July, after Elijah's MRI results are in (MRI a week from yesterday...pray!) so we can discuss the chances of birth defects happening with other pregnancies, if other pregnancies were to happen.

Another thing behind us, phew! I'm feeling super anxious about his MRI next week. I just hate having him sedated and upset and poked and in the hospital, but it will be another good thing to put in our past.

If you're wondering, The Cough is still an unwanted guest in our home. We generally only hear him during the day, which is nice, but it would be nice to have him out for good. We're really just through with this punk.

Little update: After writing this post, we noticed that Elijah's wheeziness and cough are worse today. :( Un. Freaking. Believable.

Genetics

Elijah had an appointment with his genetics doctor this morning. Again, we have confirmation that we have the most wonderful doctors on planet Earth. She, like the rest of his doctors, is amazing with our little boy. She performed a basic exam on him, checking reflexes, listening to his heart, feeling around on his body a bit, weighing, measuring. She noted the main anomalies Elijah was born with: a solitary kidney, a heart defect, hypospadias, a sacral dimple. She noted a few other, smaller things: small ear canals, a funny toe, a large head, short limbs, gross motor delays, speech delays.

She said that looking at him, he looks 100% normal to her. Sometimes she can recognize facial features that would indicate a specific genetic disorder, but she can't see anything obvious when she looks at his beautiful little face. She said, "He looks just like you, except with a big head!" :)

At this point, we don't know if all of these weird big things and weird little things have a genetic explanation or if they are all just a fluke. The testing that was done two years ago came back completely normal. Now the resolution of the tests is better than it was back then, so she wants to run them again to be sure the results were accurate.

She also wants Elijah to see a pediatric neurologist. He has very low muscle tone (hence the delayed gross motor) and it would be good to rule out any brain abnormalities as a cause for it. The neurologist may want to do an MRI of his head, so that may be in his future.

After we see the neurologist and after the results of the genetic screening come back (it takes 8 weeks to get results), we will go back to the genetics doctor and go from there!

Elijah had a tough time with the appointment, and of course with the blood draw that followed. They did nothing that hurt him while in the doctor's office and he was just a mess. His little face looked so scared. Even while the nurse was sitting and talking to us, he had his arms wrapped around my neck super tight. Every once in a while he looked up at me and gave me a PLEASE MAMA, NO! look.

By the time we left there I was swallowing back tears. If a harmless exam got him that worked up, I knew the blood draw would be bad. I sat him down in the waiting room and said, "Elijah, you're going to have to get a little poke now. It might hurt a little bit, but it will be quick, and I'll be with you." He understood at least the gist of what I had said because his lower lip came out and he let out a quiet little sad cry, then he gave me a hug.

Fear and anxiety were all over his face. I started thinking, is it better to save some of the anxiety and just spring pain on him? Or is it better to put it out there and tell him what's coming? My gut tells me to be honest about it, because that way he can always trust me to tell him if something is or isn't going to cause him pain. After seeing his little worried face, though, I just felt so sad for the fear he was feeling. I sat with him in the waiting room and I said a little prayer in my head. I prayed that the blood draw would go as well as a blood draw could go.

I heard his name being called and I looked up to see the lab guy who has always had great success with drawing blood from Elijah in the past. We have had some pretty bad blood drawing experiences, but both times we had this guy, he did a great job. I almost hugged him! He was like an angel standing there in front of me. I remembered that his name was Dan, so I said, "OH DAN!" Luckily he remembered us from previous hospital visits, so he knew I wasn't a total fruity lady. He did a really good job with Elijah. He got a vein on the first try (!!) and it didn't take long at all. Of course, Elijah wasn't having any fun, but my prayer was answered. It went as well as it could possibly have gone. THANK YOU, GOD!

So, overall a good appointment, minus some emotional trauma. Looks like we're a step closer to getting genetic answers, if there are genetic answers to get. Thanks for the prayers! xo

If you can look past the messy living room and pantless little boy, this is soooo cute...

I just love how he has to stop walking to do his cute little arm dance. And look, he is walking!



We had such a good weekend together. Minus the unnecessary yelling, which Elijah likes to do a lot, it was nice. We spent today with Dan's family, celebrating his dad's birthday. Saturday we christened our new grill and made some yummmmy salsa burgers and grilled veggies and potatoes. Elijah has been saying more words in the past few days and I love it. I think he is saying "all done" now (which comes out 'aahh duhh'). He spent the afternoon with his cousins and, although he didn't interact much, he did well with the attention.

We are anticipating tomorrow's genetics appointment. Ugh. I'm praying that it goes well. Dan has to work, so it's just me and the cute boy. We will let you know how it goes!

I'm off to relax with hubby a bit and then head to bed. I hope you all had a great weekend! xxoo

Ankle support and genes

At Elijah's PT session on Thursday, his therapist took off his shoes and socks and rolled up his pants and watched his legs, feet and ankles really closely as he walked around pushing a little grocery cart. After watching him for a while, she told me she thought it would be best for Elijah to get braces. His little ankles turn inward and his feet turn out and he doesn't bend his knees when he walks. He just isn't getting the support he needs in order to walk properly. She said we could wait a few months to see if it gets better, but really, why wait. She feels that giving him more stability with some AFOs (ankle foot orthotics) NOW could really help him learn to walk more quickly. And it is time. He needs to start walking here, soon.

Sometime in the next couple weeks we will see an orthotist, who will take custom molds of Elijah's feet and legs (should be a fun experience). Most likely the braces will need to go up his entire calf, but the orthotist will be the one to determine that. We are hoping that this will be a step toward getting our little man stable on his feet and walking. I think I just heard my back shouting for joy!

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Elijah has an appointment with his genetics doctor on Monday. We haven't seen her since Elijah was in the NICU two years ago. Since our (perfect) little boy was born with a handful of anomalies, and since he is still delayed in speech and gross motor, there is a possibility that he could have a genetic condition to explain everything. They ran all of the basic tests when he was a few days old, and the results from those were normal, but those tests don't rule everything out.

A lot of our little heart friends have genetic conditions, so please don't take what I'm about to say the wrong way. I am in no way dissing on genetic conditions and your awesome little babies.. I am a bit nervous about the appointment. I know that's silly because even if Elijah has a hundred genetic conditions and sprouts nineteen extra toes, I will love him just the same. Maybe even more, because I'd have to give extra love to all of those toes. It's just, I don't want another label to put on my little boy. We have gone two years believing that Elijah has this, this and this "wrong" with him. At this point, it would feel weird to put another major thing on the list.

Here's the thing that calms me, though. If God made Elijah with a genetic condition, then that is a part of who he is and we will embrace it fully. Elijah is PERFECT. No matter what.