Friday, July 27, 2018

Houston and her first iron infusion

Reagan had a follow up with her EPI-743 study doctor Wed in Houston. Mike took off and we drove there and back the same day (as we always do). It certainly makes for a long day. We left at 8am and didn't get back til 7:30pm! We were so lucky that Reagan was in a good mood and handled everything like a pro. We had a long wait for the dr and then two missed sticks for her blood draw (and left without the EKG), it was kind of a pointless appointment. The only thing that we really took away from this appointment was how extremely serious her hemoglobin incident was. Her doctor said the level she had gotten down to was barely compatible with life. So SO scary. He was also pretty adamant that they need to figure out what caused it. Hopefully they do, but for now everyone is still scratching their heads. Today Reagan had her iron infusion. We were hoping to get the missed labs from the other day drawn, but no surprise, they had a hard time finding a vein and once they did, they were afraid to draw from it and blow it. So no labs...again. They were able to do a quick CBC and her hemoglobin levels had gone up to 10.3 (and that was even without the supplemental iron). I asked if she still needed the infusion today, but they were insistent that she needs to build up her reserves and it was necessary. The iron infusion itself went smoothly. They watched her for a while afterward to make sure that she didn't have an allergic reaction, but she was fine. We'll go back in two weeks from now for a second infusion. Hopefully her numbers look good. Thank you for keeping her in your prayers.


Saturday, July 21, 2018

Hematology follow up

Reagan had a follow up appt yesterday with hematology. First she had horseback riding and then her drs visit. She was a bit sleepy today but perked up just long enough for her riding lesson and then she slept through her entire drs appt (even the blood draw). She had a sleepy day yesterday and it looks like she's still a little groggy today. We spoke with the doctor first and she didn't have much new information. Everyone is still scratching their heads as to what could've caused this major anemia in our girl (she threw out the idea of parvo, the human form, fifths disease, can cause severe anemia and might explain that mystery fever she had a week ago). But who knows. Ugh. A year ago her hematocrit level was 14; when we went into the hospital a few weeks ago, it was down to 3.5. That's a HUGE drop. When we left the hospital, after 3 transfusions, it had gone up to 7.6. After a week at home on iron it had gone up to 8.5. Two weeks later on iron it has only gone up to 9.3. Normal for kids is 11-14. The doctor was not happy that it hasn't gone up more in that amount of time. So now we try iv iron infusions. The good thing is it doesn't go through her gi system so it will solve any absorption problems she might be having. The bad thing is that it's iv. It will have to filter through her liver and she already has so many meds doing a number on her liver, it's not ideal, but we really have no other choice at this point. Please keep her in your prayers. We go in for her first infusion next Friday 7/27. I'm hoping and praying everything goes smoothly. For her veins (she's not an easy stick) and her liver! She had a great day today, she was super sweet and happy so we finally got her back in the pool! Love this girl!

Friday, July 6, 2018

Crazy week

Reagan was in great spirits all through her hospital stay but we knew it wouldn't last forever. Tuesday she started getting more serious and tense. Wednesday (the 4th of July) she woke up even more tense and then the tears started up. She was miserable all day that day, which sucks because we had a house full of people over to celebrate. Pain medicines weren't helping for more than an hour or so at a time, so there was a lot of breakthrough pain. Finally as the night rolled around, she seemed to be sleeping without the aid of medicine. She dozed off on her mat with me lying beside her and we didn't dare move her...thankfully she slept through the night. She woke up Thursday calm but still very tense/stressed. Mike was off for the day and we were about to take Ryan to his swim lesson, when I got a call from her nurse. She asked me to come upstairs, something was wrong...with her (not Reagan). I ran upstairs and found her sitting laid back in a chair, sweating profusely and saying she was having chest pains. We called 911 and an ambulance/firetruck came very quickly (good to know) and they assessed her and decided to take her to the hospital. So crazy. I'm glad we were here and able to get her the help she needed ASAP. She ended up needing emergency surgery, so time was of the essence. I'm guessing she's going to be out for a while. Very scary, considering she was fine only minutes before. Today Reagan had her long awaited lab check in the hematology clinic. I'm glad they did it there as the nurses were very experienced in drawing blood and we got the lab results back within 10min. Her hemoglobin was 8.5 (it was 7.6 when we left the hospital); it's still low but trending up so that's a very good thing. For now we are just going to keep her on the iron supplements and follow up with hematology again in two weeks. Monday we have an appt with her GI doc to discuss what could have possibly caused her hemoglobin levels to drop this much in a year. The only idea I have is the change in formula. We'll see. So crazy. It's been a CRAZY week. Glad to be done with it.

Saturday, June 30, 2018

Pale and sleepy...not a good combination

So Reagan has had a bit of an "off week". Her new nurse commented a few times that she seemed pale, but Reagan is always pale, so I thought no big deal. She's also been a little sleepy this week, but that's not out of the ordinary for her either. Friday rolled around and she had a routine follow up appt with one of her specialists. While we were there, we decided to have some labs drawn that her neuro had ordered a few weeks ago. Reagan is a hard stick and it didn't go too smoothly. The first girl missed and they had to bring in the nurse who was in charge, thankfully she was able to find a vein and fill the many required vials. After that we headed to horseback riding. Reagan was a little groggy but did fine. Then we headed home. At 6pm I get a call from the nurse practitioner at the drs office saying Reagan's hemoglobin/hematocrit levels are "critically low" and we need to go straight to the ER! I was in shock. Reagan has never had any lab levels that have been a concern, so we certainly weren't expecting to get any news back that anything was wrong! I called Mike, gathered up meds and other necessities, then loaded both kiddos into the car. We dropped Ryan off at my Dad's house and headed to Dell. They took her back quickly and then we sat. They eventually sent in their best iv person who used ultrasound to look at Reagan's veins. Most of which were very small. They ended up picking one on her right upper arm that turned out to be a good one. They were then able to draw labs again to verify the original readings. We were hoping the first ones were a lab error, but that wasn't the case. Her hemoglobin was at 3.5, and since they transfuse at 7, she was VERY low. They were going to have to transfuse (and admit her). The key was they had to do it very slowly because her levels have obviously been declining slowly for a long time and they can't just add back quickly. So they admitted her to the IMC (a step down from the ICU). They had wanted her to go to the hematology/oncology floor but apparently there is a very strict ALL vaccine rule and since she's unvaccinated, she couldn't go there. The IMC was good though. It was very quiet and everything seemed to go pretty smoothly. Mike went home to stay with Ryan and I stayed in the hospital with Reagan (it was a looooong night with lots of beeping alarms and not much sleep). They transfused her with a small amount, very slowly over 3hrs. Then they took a little break, checked her vitals, made sure she wasn't reacting to the new blood, and gave her another transfusion. And then another. All of this overnight/early Sat am. Saturday morning Mike and Ryan came up, they rechecked Reagan's blood and then we waited til noon before we finally saw hematology. Her hemoglobin went back up to 7.6 which is what they were hoping for (but still way lower than the 14 she was this time last year)! They ran a bunch of tests in the ER that more or less ruled out hemolysis and they think her low levels are due to iron deficiency (her iron levels were also way off). We're not exactly sure what could have caused her iron levels to change this much in a year, but our only guess would be the switch in formulas late last year (I don't think we've had labs checked since then). They sent us home Saturday afternoon and gave us an iron supplement to start giving her. We have to call and make an appt with hematology next week and they'll order labs to check and make sure her levels are still OK. Crazy. I'm SO glad we just happened to have this appt and the office just happened to be able to draw labs, and that we eventually found someone who could actually get blood out of her, and that they NP saw us that day and knew we had labs that she needed to keep an eye out for! So crazy to think how many things had to come together perfectly for us to get these results just in the nick of time! My poor sweet girl! And she's been a super sweet trooper through it all. She's had a case of the laughs which has been such a blessing (that she wasn't having a bad day when all of this happened)! We're back home and just hoping to keep her healthy and catch up on some sleep! Please continue to keep her in your prayers!! We need some nice uneventful days!

At her drs appt in the morning...she looks fine to me!

Looking a little droopy in the ER as they search for veins.

Getting her first transfusion.

The next day with a bit more color in her cheeks!

Happy to be busting out of the hospital!

Friday, June 15, 2018

Summer is underway

We're done with our first week of summer! Ryan started summer t-ball and soccer the heat! Reagan finally got in the pool, even though she wasn't having her best day. This week has actually been pretty yuck for her. Most days were half ok and half not so good. Thankfully she was able to hold it together for most of her therapies and even make it to a cardiology appt (everything looks good), but not so good the rest of the day. Tonight as I type this she's super tense/stressed and all of a sudden nauseous. Ugh. It's gonna be a long night. Nothing is draining from her tummy, so I'm not sure what could be causing this (although last night we did find a bunch of formula/bile leaked onto her shirt). She seems a little congested, so maybe that's the problem? No clue. Hoping she can just sleep it off tonight. Lots of yawns right now, so that's a good sign. We've got a golf tournament tomorrow so I'm hoping both kiddos will behave themselves while we're gone.

Friday, June 8, 2018

And that's a wrap!

School is officially out for both kiddos! (Sorry for the lack of updates! We've been crazy busy!) Ryan had a really great last couple of weeks of school. Doing his work, not hitting friends...we were pretty happy about that! Reagan has had a pretty good month as well. She's still doing therapeutic horseback riding, though we're about to move her time to earlier in the morning as it's really starting to get hot! Both Reagan and Ryan had graduations this week. Ryan had kinder graduation and Reagan 5th grade graduation (she's moving on to middle school next year)! Not a lot planned yet for this summer. There's sure to be lots of swimming, Ryan has been in the pool nearly every day this past month! Here's some pics to recap...

Stretching after graduation!

Kinder Luau (water day)

Thursday, May 17, 2018

Super sweet

No nurse again today. This should be the last day as we have found a nurse that seems to be a good fit who will be picking up this weekend and then officially starting next week. Reagan had a sleepy day yesterday. I think it was actually a "bad day" as well, because when she was awake she was very fussy. Thankfully she slept the entire day and woke up this morning super sweet! She slept in a little but woke up just in time for PT. Then she had OT followed by school and she did well with both (although she did fall asleep at the end of school). Sweet girl. It's been a great day to snuggle with my girl and look into those big giant eyes. She is SO PRECIOUS. She's been very alert, making great eye contact, giving me smiles, and pretty easy going with the hands. I'm glad we got to have a mommy and me day!

Tuesday, May 15, 2018

Pretty good week

Last week was a pretty good week. Reagan had some good days, Ryan had another (small) modeling photoshoot and a great week at school, and Friday we had our stairlift installed! Reagan has been on an antibiotic all week for her sinus infection and while I definitely think it's helped, it has also caused major gastrointestinal upset for my girl. We are SO glad to be done with that medicine. She's also gone from being very relaxed last week, to being quite tense in her body over the weekend and this week. She's been pretty restless at night and just not sleeping well. I was just thinking the other day it had been a long time since we had seen a seizure, then pow she had one over the weekend. Monday we had a neurologist appt in Houston. We discussed increasing her Banzel to see if it helps (the levels of it in her bloodstream are VERY low since it's the same dose she's been on since 3)! So we'll see. Today she started losing tone and by the afternoon/night she was full on nauseous! Ugh. Poor girl. Thankfully she finally dozed off on her own so I moved her to her bed and raised it up a lot at the head and she seems to be sleeping pretty soundly right this moment. I'm hoping she's able to sleep the night through and kick this nausea to the curb!

Thank God a good Samaritan came to our rescue with a stroller to
 borrow for Reagan's Drs appt in Houston! We forgot hers at home!!

Sunday, May 6, 2018

We're here!

We're still here! Not a lot going on, just the busyness of everyday life. Reagan has been good, well, except for a stubborn sinus infection that we just now got antibiotics to kick. The runny nose comes and goes, but the fact that it was still thick and green finally motivated us to get her in on Friday (and the fact that the drainage was making her nauseous). We've all been battling some sinus issues, hard to say if it's a cold or just allergies, hoping we're done with that. Reagan had a good day yesterday. She was so calm and content. I couldn't stand the cuteness...I had to take some pics of her! Such a darling girl. She was super still and laid back all day, however that changed as bed time rolled around. She was getting increasingly tense, so I picked her up and held her. She calmed down and eventually fell asleep. Unfortunately she woke the second Mike tried to take her up to bed. She just got more and more upset. It looked a lot like a bad day, so we were not super hopeful on her sleeping last night or waking up this morning OK. She surprised us though, not only did she sleep the whole night through, she slept the ENTIRE day. We were really expecting a bad day today, so I have no clue what to expect of tomorrow. I'm really hoping she slept off any bad day and will wake up tomorrow feeling good.

Sunday, April 22, 2018


We've had some good days lately...exactly 17 to be exact! Well, we did have a miserable night a week ago and all day last Saturday, but my girl was sick (and wasn't technically having a "bad day"). It was rough, we all managed to pass around some sort of respiratory bug and it hit Reagan hard. Tons of thick green snot, yellow gunk running from her eyes, and nausea due to all of the drainage (and insisting on breathing through her nose didn't help). It was a rough 36hrs. She finally slept Saturday night and then woke up feeling much better on Sunday. Still sick, but not gagging and gasping for air anymore. She slept a lot Sunday and Monday and has had a pretty normal week since then (although still very congested). Wednesday we went to horseback riding and then to an opthalmology appt. We have a new opthalmologist since her previous one went on a leave of absence (all of her specialists seem to be leaving). It was a two hour appt but the doctor was in an out in less than 10min (with zero personality). She did say that Reagan's astigmatism may be making things a little fuzzy for her and we may want to try glasses again. So sounds like a new pair of frames are in her future. On Thursday we had the DME lady come out (who is also leaving), we ordered a new sling for her hoyer lift, a new bath chair, talked about getting the carseat changed out to the booster, and also discussed the new stroller we're going to be ordering. I feel like I've spent half my time lately following up about new equipment! We should be getting two new tomato chairs next week (in the next size up) and a stair lift should be coming sometime soon as well. Lots of things needing upgrading since Reagan's last growth spurt/weight gain. We also found out that our Wednesday/Thursday nurse will be leaving. Ugh. Don't get me started. The constant struggle with nursing. She's the hardest to replace because she not only worked more days for us than any of our other nurses, she worked a super late shift (so we'll probably be forced to replace her with two nurses)! Double ugh. Thursday night we noticed Reagan definitely had an increase in tone and movement. She's been super crunchy, rolly/squirmy ever since. Loving rolling onto her tummy, we're having to keep a close eye on her that she's not pulling her tube. Last night she was particularly hard to get to sleep, so I was a little worried about how she was going to be today. Thankfully she woke up smiling. She's ridiculously tense in her body, and has shown a little agitation here and there, but overall pretty smiley and sweet. Hoping we're not headed the wrong direction. While I've enjoyed all of these good days, there has been a constant concern as to when they might end. Ryan has now lost both front teeth so he's got that toothless grin going. We also made an adjustment to his ADHD  medication and he's had two really good weeks in school ever since. Hoping everyone's good days continue!!!

Horseback riding 4/11

Horseback riding 4/18