Tuesday, February 20, 2018

Ugh. Bad day.

Ha! This is why I should post on a daily basis (so I'm posting about good days as well). Here I am, less than a week later, already posting about a bad day again. Ugh. Reagan had a good weekend. Super sweet and darling. She was darling yesterday too, but a little sensitive (esp in her eyes). She had a seizure with eye fluttering in the am. She definitely seemed a little more tense by the afternoon. Thankfully she slept well (she hasn't really been sleeping soundly lately) but then she just kept sleeping. At that point we began to get a little worried, since that's exactly what happened last week. She woke up around noon and no surprise, she was crying. She's been pretty miserable today. A little less screaming crying and more moany crying. Very sad. Poor sweet girl. She's been sleeping with medication, but it doesn't last nearly as long as it should (she wakes up crying within 1.5-2hrs after each dose). Really hoping she can sleep it off tonight and wake up tomorrow feeling better. Please keep her in your prayers.

Wednesday, February 14, 2018

Valentines update...

Here we go again with another weekly update. Last week ended on a sour note with a bad day on Friday. Thankfully she was much improved for the weekend but not without some damage. That little thumb that had a crack on it earlier in the week had healed only to get a bite on her bad day. So needless to say, she's had an arm restraint most of the time since then. Poor hand. It heals up only to be assaulted once again. Reagan has had a good week. She had speech Monday and today and did really well. On Monday when her therapist was done she went to the main menu of her igaze and asked her if she wanted to tell her anything. Reagan went to manners and told her thank you and good bye (using her eyes)!!! What a smart/sweet girl!! She had OT yesterday, she's been kinda flopsy mopsy for the last several days so it wasn't her best session but she was good. Reagan's nurse mentioned yesterday how low tone she seemed and was worried that it might be the calm before the storm. Well she was right. Last night Reagan escalated and went from content and giggly on the floor to laughing and flailing and having a very stressed look on her face.We were able to get her to sleep but we were definitely worried what today might hold. She's actually slept most of the day today but something is definitely off/bothering her. She was awake from 10-11 today and did OK with speech, but then promptly fell back to sleep. Even in her sleep though she was fussing and very restless. She did wake several more times today and was a bit more irritable/crying. Thankfully she would doze back off with medication. Hoping she can sleep the bad away. Sweet girl. I sure hope this is short lived! She just had a bad day last Friday...this is WAY too soon for another. Ugh.

We did go to Ryan's Valentines class party today. He had a good day!

Thursday, February 8, 2018

Update for the week...

So this post will be a weekly update of sorts. Reagan's weekend was good and she's had a nice week as well! She was a little more vocal/kooky at the beginning of the week but she's definitely mellowed out in the last two days or so. Now she's more just precious! Super smiley and cooing away. Such a darling girl! Our nurse called out yesterday and today, so that's added some stress, but we've managed to juggle everything around and get a few hours covered so we wouldn't have to miss any appts. Reagan did have a seizure on Monday...I had just been thinking it had been a while since we had seen one. There was nothing that would've predicted it, it was quite unexpected, but thankfully it was a short maybe 30sec one and then she was back to normal. We still don't have her horseback riding (hippotherapy) up and running just yet, but that should happen next week or the following week. The weather has been quite yuck, cold and rainy, lately so it's not like it would've been the best horse back riding weather anyway! As the day has gone on today, Reagan has gotten increasingly tense in her body. She's holding her pees, having temperature dysregulation issues (cold/clammy hands, feet, and legs), and even the one red ear! She's still pretty content...she just seems a little off. More quiet and sensitive. Tonight she had a huge startle that then seemed to trigger a seizure with a head turn and eye blinking. Ugh. I thought we were seeing less of those. Hopefully she can continue having good days. Sweet girl.

Friday, February 2, 2018

No nurse but a precious girl!

Our day started with a 6am call from the nursing agency. Never a good sign. Our nurse, who was actually supposed to stay late tonight because Ryan has a birthday party to attend, called in sick. UGH. So this led to me having to cancel my 2-3hr appt with Reagan's MDCP case worker (because obviously I can't answer nonstop medical questions while attending to Reagan's needs all morning), I never made it to the grocery store (I had a list a mile long), my dad (God bless him) had to go pick up Ryan, and Mike had to come home early from work so I could take Ryan to his bday party!!! What a mess. On the upside, I got to spend the entire day with a ridiculously wonderful super sweet super calm and relaxed little girl!!! Just cooing and laughing...so so SO precious!!!

Thursday, February 1, 2018

Good girl

Reagan had a good day today. She's still pretty congested. Her nurse gave her saline and suctioned out her nose a few times today. She's been in a good mood though. She had OT this afternoon. She did well for that. We discussed new goals (it's almost that time again). Every time we have to resubmit, it always makes me nervous. Her OT is a pro though and does the best job possible in explaining everything and why we need to continue at her current 2x a week. I do know, the older they get, the more insurance just wants to give up on them, so the harder the fight. But we will continue to fight the good fight for our girl. She deserves nothing less.

Wednesday, January 31, 2018

So much better

Whew! So happy to be done with that. Reagan woke up this morning feeling SO much better. Very calm. We did notice a big red mark just above her bottom. We think it must've been from her being her her chair so much the other night and then laying flat on her back the entire night last night. Poor girl, she just can't catch a break. She has such sensitive skin. We've been keeping her on her side all day today. The redness has definitely started to fade but it's not gone yet. She had a good day today. She had OT and school/vision. She wasn't super interactive today, but we'll take it. Just so happy to see her calm and content again. 

Monday, January 29, 2018

Nausea for a bad day

Reagan slept in a little this morning and woke up very serious but OK (and no longer nauseous)! She wasn't awake for long before she dozed back off (still in her chair). We didn't dare mess with her, we were just hoping she'd wake back up OK. That did not happen. She woke up just after noon and the crying started. We moved her to the floor, got the first pee of the day from her, and gave her some oxycodone. She dozed back off. She was up and down the rest of the afternoon (crying when awake), but thankfully she didn't require any more medicine. Just some consoling and she'd fall back to sleep. We kept her on her mat on the floor, happy that she was finally able to get out of her chair and lay down. Really hoping she can sleep tonight, but it doesn't look good. My poor sweet girl. Hoping she has a much better day tomorrow.

Sunday, January 28, 2018


Reagan was OK this morning, a little serious but OK. But she started getting nauseous as the day went on. Tonight it was really bad. I think it's being caused by sinus drainage, it's more of a choking gag than a true nausea. Poor thing. It's actually even harder to watch. It's like she's actually choking/not breathing when she does it. Suctioning helped (making me think my drainage theory is right). We did go ahead and switch her to just pediatlyte for tonight. Then we put her in her tomato chair, gave her clonidine early, and are praying she is somehow able to sleep it off!

Saturday, January 27, 2018

Precious girl

Reagan has been PRECIOUS today (and most of the week really). She's super smiley, very talky, making great eye contact and just all around wonderful. Yes, she's still wanting that hand in her mouth nonstop and becoming quite the pro at pulling the sock off of it when we try to cover it up! She's also quite the squirmer moving all over the floor at warp speed! She's also been super rolly. Rolling onto her tummy and then getting almost all of the way over but trapped on her belly because of one awkwardly positioned arm! Such a silly girl. We had a super lazy laid back day today. Watched Toy Story 2 & 3. Lots of UmiZoomi and other assorted cartoons. Just took it easy and got nothing accomplished. My kind of Saturday.

Sunday, January 21, 2018

Still here!

So I have MAJORLY dropped the ball lately. It really has been a snowball effect. I get behind, then I tell myself I can't publish blogs I've already written, because I need to fill in the blanks...meanwhile more and more blogs don't get written! Ugh. So sorry. My mom finally called the other day asking "Are you still doing the blog?" The answer is yes. I've definitely gotten behind and missed some days (weeks) but I will do my best to publish what I've got and try to stay current. I've been fighting the flu for the last week or so, so that definitely hasn't helped. As I ran my half marathon last Sunday, I was congested and coughing. By Monday I was miserable and running a fever. My entire week was basically shot. I was SO sick and I'm still not over it. I still have a huge cough, congested and runny nose, and I'm exhausted. Ryan had a fever this past Friday and the Friday before, but other than a runny nose, he hasn't had any ongoing symptoms. Reagan has been congested in her nose, but that's all. Hoping both kiddos can avoid what I've been dealing with. This morning the drainage in Reagan's nose was really causing her trouble giving her the sensation of nausea. Poor girl. After some saline and nose sucking, she's been better. She's actually been pretty darn precious all day. Making sweet laughing noises...like to coo of a dove. Very laid back. Very low tone and still. A doll. Hoping for a good week for my girl.

Wednesday, January 10, 2018

Back in the Saddle

Reagan had a good morning. She was very calm and quiet. She did OK for speech but did fall asleep shortly thereafter. Thankfully she woke back up after not too long. We did notice she seemed a little sensitive this afternoon just before we were leaving for her horseback therapy evaluation. We weren't sure how it was going to go. When we got there it was super windy and just trying to get her out of the car, she was super sensitive and even gagging because of the wind. We got her into the barn and it was much better. They actually worked with us and just did the entire evaluation inside the barn, so she wouldn't be exposed to the wind. It was great. They found a horse, Patches, that is on the shorter side for her to ride and she rode with one person walking beside her on each side (and just our nurse giving some support from behind). Originally they thought she would have someone riding behind her, but she was doing so well today, I'm pretty sure we will end up doing it this way. She was doing a great job activating her muscles and sitting up on her own (with very little support). It was amazing. I can definitely see how this will be great for her. She seemed to enjoy it as well. I'm glad we went ahead with it today despite her sensitivities. She was feeling a little better tonight so hopefully she'll be great by tomorrow.

Tuesday, January 9, 2018


Reagan slept well last night and woke up super sweet and darling this morning. She definitely had more tone this morning, so thankfully now that the low tone is gone, she's no longer spitty/gaggy.

Monday, January 8, 2018


Reagan was good today but very low tone resulting in some gagginess this afternoon. Poor girl. Really hoping that goes away. It was more of a choking, but we really couldn't put her on the floor at all without triggering it. I'm pretty sure she's going to have to sleep in her chair tonight. Ugh. Nausea, nausea go away!

Sunday, January 7, 2018

Laid back day

My girl has been super precious today. Very laid back and calm. Happy to have her hands in her mouth, but also laid back enough that they don't HAVE to be in there. She's been a little vocal but calm vocal...if that makes sense. This morning two of Mike's sisters came by for a post Christmas visit. They came bearing gifts, which made Ryan very happy! We hung out for a couple hours, until we had to take Ryan to a birthday party (while a nurse stayed with Reagan). Ryan enjoyed himself although we did witness some very mean boys. Boys who were intentionally picking on Ryan. Ugh. Sweet Ryan didn't even notice, but we noticed. We moved on to something else and Ryan hung out with a much nicer little boy the rest of the time. The rest of our day was a lot more low key. Just laying around the house watching football. Hoping for a great week for both kiddos. After Ryan's rough day on Friday (and Reagan's for that matter), we're really hoping they turn it around and have a much better week this week!

Saturday, January 6, 2018

Taking it easy

Reagan woke up this morning SO much better. Thank goodness. Very calm and quiet. Content. And when she's content, we're content. We all took it easy today. Everyone needed to recover from the yesterday. Mike went fishing for a bit. The kids and I watched movies. Everyone had a good time. Hoping for many more good days to come!

Friday, January 5, 2018


Reagan had a terrible day today. Sleep last night was not great. I had to get up several times with her and she was NOT happy. Super miserable today. Crying when awake all day. Thankfully she slept a lot. We had to keep her arm restraints on because she was super bitey. Poor girl. It was a rough day. Finally tonight after the nurse left...we saw a light at the end of the tunnel. She was awake and not crying. FINALLY. I think she's turned the corner! Hoping and praying for sleep tonight and a much happier girl this weekend!

Monday, January 1, 2018


Reagan was awake a lot last night. Maybe because she slept a lot yesterday morning, maybe not. Silly girl. She was a spunky chicken again today. Super sweet and darling. Still vocal and wanting that hand. We had a nurse today, so Reagan stayed behind when we took Ryan over to my Dads to do the polar bear swim. Their neighborhood pool is heated and they have a polar bear swim on New Years each year. This year it was particularly COLD (for Texas anyway). It was about 25 degrees at noon when they went. Ryan didn't care...he enjoyed himself! We were the ones that were cold (sitting outside watching them)! Afterward we went back to my Dad's house to celebrate my stepbrother's birthday. It was a nice afternoon. We got back with just enough time to give Reagan a quick bath before her nurse left. Mike ran to the store to get some cabbage and black eyed peas for dinner! I guess we can wait and eat more gumbo tomorrow! Something to look forward to!