You know the saying "If you don't have anything nice to say, don't say anything at all"?? That's what your mom always taught you, right? Well, now you know why I haven't been blogging lately.
No pictures.
No updates.
No stories.
Nothing.
Because I don't have much nice to say.
We had about two good days.....in the past couple of weeks. In general, I would say that most days find us frustrated, overwhelmed and anxious. All of us.
Wednesday was a good day. Start to finish - it was good. I was very hopeful that we had turned a corner.
Today was another rough one and I started this post with tears in my eyes and a heavy heart.
Ava looked at me today and said in a mournful voice, "I never wanted to do this in the first place!" and I just didn't know what to say. *I* didn't want to do this either. I remember the first time I saw the ex fix on a forum for Perthes and I showed it to Ryan and distinctly remember saying, "We are NOT doing THAT to her!"
Yet here we are.
We are 6 weeks post op. And still struggling in much the same ways and with most of the exact same things as the very first week. Which is very frustrating.
I am most frustrated with the fact that her pin sites don't seem to be healing as quickly or as well as all the other kids who had surgery around the same time that she did. I am finally seeing some healing in the top three and the big, long pin is closing up from the large, gaping wound that is was. Hallelujah. But she still complains of pain in all of them - and the bottom two pins hurt her the most and look the worst. I have had Dr. Standard's cell phone number for a while now, but haven't wanted to be 'that mom' and text him. It just seemed too invasive or something. But finally on Monday, I texted him with pictures of her pin sites asking for advice. He got right back with me and said that the bottom two (distal) pin sites have GRANULOMAS on them - which is basically hyper-healing tissue that will not heal without corrective treatment. He said that his PA would be in touch with me the next day for further instructions. Well, as has become normal, I didn't hear anything back the next day...so I emailed her the following day. Still heard nothing. I emailed and called the next day after that and still didn't hear. So finally on Thursday evening I texted him again to say that I hadn't heard anything yet and wasn't sure what to do to proceed. Finally, this morning I heard back that the recommend a silver nitrate treatment. She said is 'wouldn't hurt' in her email, but when I went online to do some research, I found that silver nitrate is a cauterizing agent! The sticks basically look like matches and you rub them on the wound and it turns the tissue black. Ummmmm...my freaked out child who is super anxious if anyone even gets close to touching any of the pin sites? Yeah - she is not going to tolerate that well. I also read quite a few commenters who said that it does, indeed, sting/burn and they recommend lidocaine or other anesthetic agent first if you are going to do this. I also found that the silver nitrate sticks are prescription only. So we have two options, really. Either we try to get our pediatrician to do this - which isn't going to happen...I called their office and spoke with the nurse and she pretty much acted like I was crazy to even suggest it - or we travel back up to Baltimore to have their office do it.
I don't know what we are going to do. This weekend, we are going to apply an over the counter drying agent to those granulomas to see if we can help them heal without the silver nitrate and make a decision on Monday, I guess. :/
Today I'm kinda feeling like having a big pity party. We have 11 weeks left of the ex fix and then we go back for removal surgery and she has to wear a brace for 23/24 hours a day for the following 6 weeks. I think we are far enough into this process to be frustrated but not seeing the end of the tunnel....kinda feeling like it will never end.....
I hate to admit this, but I knew that Ava was not my child who could withstand something like this. I knew it would be a horrible process if something were to ever happen to her. She's just not my easy kid. She's never been one to 'roll with it'. And I feel like we are all just sludging through each day of frustration and tears, anxiety and depression.
I don't want to stay positive.
I don't want to hear 'it's only temporary'.
I don't want people to tell me how good she looks. (when they don't see her meltdowns)
I don't want to 'look on the bright side'
What I want most is her pin sites to heal so that she isn't in constant pain when she moves and so that she can get sponges on and off without all the screaming. I really feel like if they were more healed, she wouldn't be so damn anxious about every.little.thing.
And I want her to eat and drink so that she is hydrated and nourished (which will probably help with her bad attitude).
But really, I don't want to do any of this.
Friday, July 25, 2014
Tuesday, July 8, 2014
It's hour-by-hour
At this point, we are taking Ava's recovery and our daily life hour-by-hour. There is literally no way to tell how things are going to go from one moment to the next. I had a friend message me and say that it looked like the transition home went really well....and I had to laugh. Because at that very moment, I had just finished an hour and a half long pin care routine with my 8yo literally screaming at the top of her lungs. I was in one of those 'this is absolutely terrible and I can't imagine it getting much worse' moments. But there have been good moments - where Ava has laughed, we've had wonderful visitors, and even gone on some outings. But our days are filled with contention. She is mostly whiney with a side of belligerent.
Ava was doing really quite well until late last week when she decided that she was going to absolutely refuse to take her medication....pretty much ALL of her medication. Luckily for us, she doesn't have any infections or anything and doesn't need antibiotics. But what she's currently taking is to manage her pain and keep her comfortable (as well as a few vitamins to keep her healthy, her bones growing, and things to keep her bowels moving). But pain is a very interesting thing when you are talking about a child. My sister, Amber, and I were talking about how not only does a child not have the language to express their pain type and level, but they simply don't have the life experience to understand what they are feeling. I have never had six pins in my body - I don't know what that feels like. And I don't know if what she is feeling is truly pain from the pin sites, or pain in her bones, or vibrations or just general uncomfortable feelings. She has only ever had pain from a scratch or scraped knees before....or a stubbed toe! So this isn't anything like any of her previous hurts and she probably has no idea how to describe what it feels like.
What she does know is that she hates the taste of medicine. Which sucks because she's never really had to take medicine before, and now having to take something every 4 hours for a full 4 weeks now is probably getting really old. We have experimented with stretching out the hours between dosages and/or cutting her dosages in half to see if she feels better, but nothing really is working. And it's a 10-15 minute struggle to get her to drink the damn medicine no matter what we do. I've tried all the suggestions - I've bribed her, I've explained to her what the medicine does and why she needs it, we've offered her anything to eat or drink with the medicine, etc. etc. So, late last week when she absolutely refused to take it anymore, I didn't know what to do. One of the Perthes moms that I've been in contact with suggested that we try the tablet form of oxy in order to get it in her system. While she hasn't been able to swallow pills before, we've been working on it and she can chew up some food, put the pill in, and swallow the food and pill together.
But I had no idea how hard it would be to get it for her. First, it was a holiday weekend, so the PA wasn't in and didn't respond to my emails until today. Because oxycodone is a narcotic, I have to have the actual paper prescription in my hand to take it to the pharmacy - they cannot call it in. So, she said she would put it in the mail and it would be to us in a few days. Well, that doesn't work for us between now and then. She has to be able to sleep at night, all night....she has to be able to go to physical therapy and do the exercises...she has to be able to stand pin care every day. So, waiting 3 days is just not feasible. The PA said she would call our pediatrician to see if he would write the script. Here's where the story gets even more crazy. Apparently, our pediatrician is on vacation this week and she said that none of the other doctors in the practice felt comfortable prescribing a narcotic because they haven't seen her. For a moment, I felt defeated, but understood. But then I got mad. I mean, I get that a narcotic like oxycodone has rules around it. I get that they have to be more careful because people will do anything to get their hands on this stuff. But the fact that good people have to suffer and jump through all these hoops is kind of crazy. So, I called the pediatrician's office myself. I spoke with the nurse manager and gave her a piece of my mind. It is hard to balance trying to be polite and respectful of someone's job and standing up for my child. I asked her if it was in their records that her pediatrician saw her in May and filled out all her pre-op paperwork. She said yes, the file indicated that. So I asked her what more we could do besides showing that my child was having this surgery and the surgeon's office calling them today to ask that they write this script for pain medication. I explained that they are sending me a paper prescription and we just need a few days to get us by. She said she spoke with the doctors on staff and they just wouldn't do it. I said, "Do I need to bring my child into the office in her wheelchair in the morning to see one of the doctors?" Finally, the night doctor on call agreed to write the script for 7 pills to get us by. I went to the office to pick it up - one of the nurses was a bit short with me, barking that she 'needed my ID' and I had to sign for the script - but the other was very kind.
So, I finally got what I needed and headed to the pharmacy around 7:15pm thinking that I could quickly get it and get home to put Ava to bed. But I didn't realize that I'd have a hard time actually getting the script after that! The pharmacy was also kind of short with me - needing my ID three more times *roll eyes* - and the pharmacist told me it would be an hour to hour and a half because she 'had to put her information in a VA state database and jump through all these hoops because it's a narcotic. Geez Louise!! 7 measly pills of 5mg each?? The whole process was absolutely ridiculous just to have a few pills to keep my kid out of pain for a few days. Ugh.
We have had such wonderful support from friends and family so far during this journey. I can't express how much it has helped to have my mother here to help with pincare and Ava's shower, how amazing it was to have Donna (my mother-in-law) stay here for the last week so that I could get some sessions shot and a few edited (although I'm still really behind on that!), and my sisters for being there for me to talk to, get advice from, and laugh with occasionally. Having meals delivered to the house every couple of days has also really been fabulous. I am so tired, honestly, and I can barely think straight anymore, so trying to figure out a dinner plan is just more than I can do at the moment. I know that sounds crazy, but it's true. And we've had some wonderfully sweet gifts too. This week, Ava opened one of the sweet presents that one of my clients gave her and she was so excited to see this set inside! Super-Ava!
WARNING: Graphic photos of her pinsites below.....be forewarned!
This is the 'long pin' - the one in the middle of her femur:
The first picture was last week. I was a bit worried about the greenish-yellow color of the inside. I sent this picture to them at Dr. Standard's office and she said that the greenish-yellow color is fibrous material, like a liquid scab and to leave it alone. The middle picture is the one that hurts me to look at. It looks like the pin is being pushed forward on her little body and the hole is opening up more and more. The last picture was today - it looks bigger and more 'angry' than before. :/
And these are the two knee pins. See the stitched up areas on both of the knee pin sites up to the front a bit? That is where they went in to find the places to put these pins and then decided that those were not good for her. So they came out and stitched those holes up. I call them the 'oopsies'. :/ But apparently they can't find the exact spot until after they are in there. (what?!?!)
Okay - I'm trying to type this and falling asleep as I type, so I'm heading to bed. Will try to keep updating as we go along here.....night, all!
Ava was doing really quite well until late last week when she decided that she was going to absolutely refuse to take her medication....pretty much ALL of her medication. Luckily for us, she doesn't have any infections or anything and doesn't need antibiotics. But what she's currently taking is to manage her pain and keep her comfortable (as well as a few vitamins to keep her healthy, her bones growing, and things to keep her bowels moving). But pain is a very interesting thing when you are talking about a child. My sister, Amber, and I were talking about how not only does a child not have the language to express their pain type and level, but they simply don't have the life experience to understand what they are feeling. I have never had six pins in my body - I don't know what that feels like. And I don't know if what she is feeling is truly pain from the pin sites, or pain in her bones, or vibrations or just general uncomfortable feelings. She has only ever had pain from a scratch or scraped knees before....or a stubbed toe! So this isn't anything like any of her previous hurts and she probably has no idea how to describe what it feels like.
What she does know is that she hates the taste of medicine. Which sucks because she's never really had to take medicine before, and now having to take something every 4 hours for a full 4 weeks now is probably getting really old. We have experimented with stretching out the hours between dosages and/or cutting her dosages in half to see if she feels better, but nothing really is working. And it's a 10-15 minute struggle to get her to drink the damn medicine no matter what we do. I've tried all the suggestions - I've bribed her, I've explained to her what the medicine does and why she needs it, we've offered her anything to eat or drink with the medicine, etc. etc. So, late last week when she absolutely refused to take it anymore, I didn't know what to do. One of the Perthes moms that I've been in contact with suggested that we try the tablet form of oxy in order to get it in her system. While she hasn't been able to swallow pills before, we've been working on it and she can chew up some food, put the pill in, and swallow the food and pill together.
But I had no idea how hard it would be to get it for her. First, it was a holiday weekend, so the PA wasn't in and didn't respond to my emails until today. Because oxycodone is a narcotic, I have to have the actual paper prescription in my hand to take it to the pharmacy - they cannot call it in. So, she said she would put it in the mail and it would be to us in a few days. Well, that doesn't work for us between now and then. She has to be able to sleep at night, all night....she has to be able to go to physical therapy and do the exercises...she has to be able to stand pin care every day. So, waiting 3 days is just not feasible. The PA said she would call our pediatrician to see if he would write the script. Here's where the story gets even more crazy. Apparently, our pediatrician is on vacation this week and she said that none of the other doctors in the practice felt comfortable prescribing a narcotic because they haven't seen her. For a moment, I felt defeated, but understood. But then I got mad. I mean, I get that a narcotic like oxycodone has rules around it. I get that they have to be more careful because people will do anything to get their hands on this stuff. But the fact that good people have to suffer and jump through all these hoops is kind of crazy. So, I called the pediatrician's office myself. I spoke with the nurse manager and gave her a piece of my mind. It is hard to balance trying to be polite and respectful of someone's job and standing up for my child. I asked her if it was in their records that her pediatrician saw her in May and filled out all her pre-op paperwork. She said yes, the file indicated that. So I asked her what more we could do besides showing that my child was having this surgery and the surgeon's office calling them today to ask that they write this script for pain medication. I explained that they are sending me a paper prescription and we just need a few days to get us by. She said she spoke with the doctors on staff and they just wouldn't do it. I said, "Do I need to bring my child into the office in her wheelchair in the morning to see one of the doctors?" Finally, the night doctor on call agreed to write the script for 7 pills to get us by. I went to the office to pick it up - one of the nurses was a bit short with me, barking that she 'needed my ID' and I had to sign for the script - but the other was very kind.
So, I finally got what I needed and headed to the pharmacy around 7:15pm thinking that I could quickly get it and get home to put Ava to bed. But I didn't realize that I'd have a hard time actually getting the script after that! The pharmacy was also kind of short with me - needing my ID three more times *roll eyes* - and the pharmacist told me it would be an hour to hour and a half because she 'had to put her information in a VA state database and jump through all these hoops because it's a narcotic. Geez Louise!! 7 measly pills of 5mg each?? The whole process was absolutely ridiculous just to have a few pills to keep my kid out of pain for a few days. Ugh.
We have had such wonderful support from friends and family so far during this journey. I can't express how much it has helped to have my mother here to help with pincare and Ava's shower, how amazing it was to have Donna (my mother-in-law) stay here for the last week so that I could get some sessions shot and a few edited (although I'm still really behind on that!), and my sisters for being there for me to talk to, get advice from, and laugh with occasionally. Having meals delivered to the house every couple of days has also really been fabulous. I am so tired, honestly, and I can barely think straight anymore, so trying to figure out a dinner plan is just more than I can do at the moment. I know that sounds crazy, but it's true. And we've had some wonderfully sweet gifts too. This week, Ava opened one of the sweet presents that one of my clients gave her and she was so excited to see this set inside! Super-Ava!
We had a good day at PT last week and Ava walked all the way in and out without any tears or frustration. That is progress for sure!
We went to a friend's house for a BBQ for the holiday weekend and it was wonderful for Ava to get in the pool and play with the kids. She did a LOT and kind of overdid it a bit. She was a tired mess when we got home that night - and pin care is always worse when she is tired or upset to begin with.
WARNING: Graphic photos of her pinsites below.....be forewarned!
Here's a snapshot of the exfix on her leg. We are experimenting with the blue clips and sponges vs. sponges alone or sponges with gauze. It's a juggling act for sure! The two pins on the right that you see are the 'knee pins' - they are closest to her knee and cause her a lot of pain. The middle pin (under the pink arrow and the blue zip tie) in the middle of the picture, is the one we are having trouble with - and she doesn't like it to rub anything. The top three pins are to the right in this picture and you can see the incision scar going from the front hip pin up to her groin area. The incision is nearly completely healed - but there are still stitches in it that need to fall out.
The first picture was last week. I was a bit worried about the greenish-yellow color of the inside. I sent this picture to them at Dr. Standard's office and she said that the greenish-yellow color is fibrous material, like a liquid scab and to leave it alone. The middle picture is the one that hurts me to look at. It looks like the pin is being pushed forward on her little body and the hole is opening up more and more. The last picture was today - it looks bigger and more 'angry' than before. :/
And these are the two knee pins. See the stitched up areas on both of the knee pin sites up to the front a bit? That is where they went in to find the places to put these pins and then decided that those were not good for her. So they came out and stitched those holes up. I call them the 'oopsies'. :/ But apparently they can't find the exact spot until after they are in there. (what?!?!)
Ava is so tired after PT that she has been taking a nap. One day this weekend, she asked to read a bit first and I told her she could for 10 minutes. I came back to find this. <3 My little bookworm!
Today, we had a pretty good day. We went to Cinema Cafe and watched Rio2 which was funny! Pincare wasn't quite the complete nightmare it has been, although it wasn't great either.
Okay - I'm trying to type this and falling asleep as I type, so I'm heading to bed. Will try to keep updating as we go along here.....night, all!
Sunday, July 6, 2014
Strong Willed Rough Days
We have now been home over a week and for the first 6 days or so, things seemed to go pretty well. We were making progress, however slight, with pincare and getting around, we transitioned to PT here at home, and we had friends bringing us meals every few days which took a lot of stress away.
Ryan's mom spent a week here and was a huge help since I needed to be at the studio for sessions and appointments nearly every week day this week. Funny how things stack up when you take time completely off!
But the past 3 days have been just awful. We are now in the battle of the wills. I'm not sure what changed or how attitudes have shifted, but it seems like Ava has decided that she is just unhappy all the time and she's going to take it out on us. She is currently refusing to take pretty much any medication on schedule - even just the Tylenol that has been keeping pain at bay. What can you do when someone refuses to take meds? We can't literally pour it down her throat! It is absolutely infuriating and frustrating. As her mother, I want to be kind and loving, but after 3 weeks of kind and loving and all I'm getting is whine, whine, cry, complain, and rude behavior toward everyone, it's really hard to want to be kind. Yes, I know her world has been rocked but at some point, she's gonna have to 'suck it up' and deal. This is our new normal. I don't like it either. But sitting around whining doesn't change anything. And refusing to take the medicine that will help you feel better? That's just cutting off your nose to spite your face, kid.
Sigh.
I'll do a more positive, picture post soon. Just can't manage it at the moment. I'm working on getting all my orders done (burning 9 flash drives today!) and editing the 8 sessions that are sitting in the queue now so that people don't start emailing me with "When are my photos going to be done?" I want to say, "As soon as I have a full 5 minutes to focus on anything but whining!!"
This is kind of like having a newborn again - she can't do anything completely independently. I have to help her every time she has to get up, reposition, go to the bathroom, get something to eat, get another craft/book/activity/game......it's a constant thing. I get about 10 minutes (maybe!) of something accomplished and then I am interrupted to get something else for her or deal with whatever crisis has popped up. Then, when she finally goes to sleep at night, I manage about an hour before I'm literally falling asleep sitting up on the couch with my laptop open. :/ I think the stress is just catching up to me. I'll get it together this week.....I know I will. It's just me and the kids this week, so I'm going to get a schedule together and we are going to stick to it. Hopefully that will help!
Ryan's mom spent a week here and was a huge help since I needed to be at the studio for sessions and appointments nearly every week day this week. Funny how things stack up when you take time completely off!
But the past 3 days have been just awful. We are now in the battle of the wills. I'm not sure what changed or how attitudes have shifted, but it seems like Ava has decided that she is just unhappy all the time and she's going to take it out on us. She is currently refusing to take pretty much any medication on schedule - even just the Tylenol that has been keeping pain at bay. What can you do when someone refuses to take meds? We can't literally pour it down her throat! It is absolutely infuriating and frustrating. As her mother, I want to be kind and loving, but after 3 weeks of kind and loving and all I'm getting is whine, whine, cry, complain, and rude behavior toward everyone, it's really hard to want to be kind. Yes, I know her world has been rocked but at some point, she's gonna have to 'suck it up' and deal. This is our new normal. I don't like it either. But sitting around whining doesn't change anything. And refusing to take the medicine that will help you feel better? That's just cutting off your nose to spite your face, kid.
Sigh.
I'll do a more positive, picture post soon. Just can't manage it at the moment. I'm working on getting all my orders done (burning 9 flash drives today!) and editing the 8 sessions that are sitting in the queue now so that people don't start emailing me with "When are my photos going to be done?" I want to say, "As soon as I have a full 5 minutes to focus on anything but whining!!"
This is kind of like having a newborn again - she can't do anything completely independently. I have to help her every time she has to get up, reposition, go to the bathroom, get something to eat, get another craft/book/activity/game......it's a constant thing. I get about 10 minutes (maybe!) of something accomplished and then I am interrupted to get something else for her or deal with whatever crisis has popped up. Then, when she finally goes to sleep at night, I manage about an hour before I'm literally falling asleep sitting up on the couch with my laptop open. :/ I think the stress is just catching up to me. I'll get it together this week.....I know I will. It's just me and the kids this week, so I'm going to get a schedule together and we are going to stick to it. Hopefully that will help!
Sunday, June 29, 2014
Days 15-19: Home!
I have a feeling that the updates here will start to be weekly more than daily as we settle into our lives and try to balance again. We drove home after PT on Wednesday - Ava did pretty well, actually. I knew that stopping to use the bathroom would be a challenge, but I didn't anticipate quite how much TIME we would lose doing so. I simply cannot get that wheelchair in and out of the car multiple times, and she really needed to stretch anyway - but parking and walking with her little walker all the way in a rest stop building and to the bathroom was tedious. I never had occasion to wonder before, but WHY oh WHY are the handicap bathrooms at the BACK of every restroom??? Just further away for someone using assisted devices to have to get. :/
We made it home, though and Ava has been doing pretty well. We are still battling pin care and showers and re-application of sponges every day. There is some scabbing and dead skin that needs to come off around the pin sites and she really fights me on that. But I don't want there to be any chance of infection, so I feel like I need to get those things off. She is sleeping pretty well and doesn't seem to have much pain during the day, so that is a good thing.
Up and down the stairs at home is tricky. She does well, but it still just looks precarious and scary to me. So we are trying to limit her to downstairs for the day and upstairs when it's bedtime. But the shower is upstairs and she really needs to nap in the middle of the day, so it's more like twice a day. Here is some video of the process.
We had our evaluation at CHKD PT the morning after we returned - bright and early at 7:30am (ugh!). I really like the PT we met who will be doing land therapy 2x/week. And we will have 1 day a week in the pool. I feel like she should do more than 3x/week, but am going to go with it for now and then perhaps ask for more in a few weeks depending on what her numbers look like.
We had the first pool therapy on Friday and it was definitely different. It's 1:1, which is awesome, so the therapist is 100% focused on Ava and watching when she's cheating. LOL The pool has a drop down floor, so Ava just walks on it and then it moves down and the water rushes in. Very cool!
This weekend, Ryan's mom arrived to help take the burden off for the week of transition. I have a lot of 'catch up' work to do with my photography business...clients waiting to see their images, clients waiting to get their prints/files, clients who have been waiting on me to get back to shoot their sessions, etc. I feel totally 'out of it', but slowly making my way back to caring. Not that I don't care about my clients, but when you are 100% focused on a child's every physical need like this, it is exhausting and leaves absolutely no room for anything else. I thought I would have a few hours up there each day - or even every other day - to edit or something. But I honestly did NOTHING the entire 2 weeks I was in Baltimore. There just was not time. The all-encompassing nature of this process is overwhelming. Thank God for my friends and all those who signed up to bring us meals. It has been wonderful this week not to have to worry about getting to the grocery store and preparing dinner every night. Thank you, thank you, thank you!
We made it home, though and Ava has been doing pretty well. We are still battling pin care and showers and re-application of sponges every day. There is some scabbing and dead skin that needs to come off around the pin sites and she really fights me on that. But I don't want there to be any chance of infection, so I feel like I need to get those things off. She is sleeping pretty well and doesn't seem to have much pain during the day, so that is a good thing.
Up and down the stairs at home is tricky. She does well, but it still just looks precarious and scary to me. So we are trying to limit her to downstairs for the day and upstairs when it's bedtime. But the shower is upstairs and she really needs to nap in the middle of the day, so it's more like twice a day. Here is some video of the process.
We had our evaluation at CHKD PT the morning after we returned - bright and early at 7:30am (ugh!). I really like the PT we met who will be doing land therapy 2x/week. And we will have 1 day a week in the pool. I feel like she should do more than 3x/week, but am going to go with it for now and then perhaps ask for more in a few weeks depending on what her numbers look like.
We had the first pool therapy on Friday and it was definitely different. It's 1:1, which is awesome, so the therapist is 100% focused on Ava and watching when she's cheating. LOL The pool has a drop down floor, so Ava just walks on it and then it moves down and the water rushes in. Very cool!
This weekend, Ryan's mom arrived to help take the burden off for the week of transition. I have a lot of 'catch up' work to do with my photography business...clients waiting to see their images, clients waiting to get their prints/files, clients who have been waiting on me to get back to shoot their sessions, etc. I feel totally 'out of it', but slowly making my way back to caring. Not that I don't care about my clients, but when you are 100% focused on a child's every physical need like this, it is exhausting and leaves absolutely no room for anything else. I thought I would have a few hours up there each day - or even every other day - to edit or something. But I honestly did NOTHING the entire 2 weeks I was in Baltimore. There just was not time. The all-encompassing nature of this process is overwhelming. Thank God for my friends and all those who signed up to bring us meals. It has been wonderful this week not to have to worry about getting to the grocery store and preparing dinner every night. Thank you, thank you, thank you!
Tuesday, June 24, 2014
Day 12, 13, & 14: On the Mend
Sorry for the delay in getting anything new posted. It was a whirlwind trip for me to go home and come back this weekend and I have been trying to catch up ever since. I also apologize for all the crappy iphone pictures. As a professional photographer, you would think that I would be using my 'big girl camera' to document this journey. And I have, somewhat. But trying to carry that on top of the wheelchair, walker, water bottle (for her), snacks, pool stuff for PT and anything else I happen to need just hasn't happened. :)
After my session at home on Sunday, I popped Carter in the car and we drove back up to Baltimore. I wasn't planning on bringing him back with me, but after 3 days of Ava literally crying at nighttime about how much she missed him, I felt like it would really be the boost she needed. I wasn't sure how he would do on the drive, but he honestly surprised the heck out of me. He didn't really complain at all - even though we took the scenic route (up US17 to US301 instead of taking I-95) and it took a full 5 hours. Only once did he say, "I didn't know it would the *this* long to get to see Ava." Ha! He did feel sick a few times on the way - he tends to get car sick - and right as we got off on the exit into Baltimore, he threw up a bit in the bag I had given him a bit earlier. Poor guy. But he seemed fine after that. I think it's the curved exits that really get his stomach turning.
I hadn't told Ava that I was bringing him, so it was a huge surprise. She was SO excited and couldn't stop saying how it was the 'best surprise EVER!"
They played together for a while before bed and she went to sleep easily and happily that night!
On Monday, we had to 'check out' of the Hackerman-Patz house. I didn't realize how long we would need to stay (apparently, there's not a hard-and-fast rule, so it varies) and they were totally full and couldn't extend our stay another couple nights. We called the 'child life specialist' a few times on Thurs/Fri and again over the weekend to see if we could get a room at the Ronald McDonald House, but she never called us back. I was a bit annoyed (okay, a LOT annoyed) that she couldn't be bothered to even return our phone calls. Even just to say sorry, we can't fit you in. We called the RMH ourselves, but they said that without a referral from her, they couldn't even tell us if there was a room available. Well, if she won't return our calls, how can we do that?!? Ugh. We ended up using the remaining points that Ryan has from his traveling a few years ago to stay at an Embassy Suites. We reserved a wheelchair accessible room, but it's about 25 minutes from Sinai. Ryan packed the car(s) while Ava and I were at PT in the morning and then he and Carter and his dad and Janet all came to see Ava in swim therapy. She's still working on stairs and getting better every day. She tends to 'cheat' on her counting - so someone kind of has to stay on top of her during therapy. The therapists are at a 1:2 or 1:3 ratio, so it seems like they are stretched a little bit. I don't know how they can really know if the kids are doing the appropriate number of exercises if they have more than one to monitor. Sunni will tell Ava to do 30 knee bends, but I think she isn't really doing them all.
Ryan was working remotely from Sinai that day, so it was hard to balance him watching her, helping us, and then also working. He happened to have a conference call he had to be on, so we got lunch and headed to the car. It would be Ava's first car ride with the fixator and I wasn't sure how any of that was going to work. We struggled and struggled to find a car seat that would work with her fixator and there just simply isn't anything out there on the market. Finally, one of the other moms whose daughter had this surgery a couple years ago said that what they did was buy a booster and cut the arms off. The thought had never even crossed my mind before! But it seemed like a simple enough task, so Ryan and his dad bought a hacksaw at the same time as they bought the car seat and went to fixing it on Sunday night.
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Getting her loaded in the car felt really rushed on Monday afternoon, because Ryan had to hurry and get to his conference call and I was trying to fit everything in my car, while Carter was yapping away at me and I was trying to get Ava in her new seat comfortably. She did awesome getting in the car and we propped her leg up and she was ready to go. I was worried about the bumps, but she did GREAT. No pain! That made me feel very good about the plan to come home this week.
We got to the hotel and I realized that I had no idea how to manage her, the wheelchair, etc. because I don't have a handicap placard for my car!!! You have to get them in the state where your car is registered and we didn't get the paperwork signed from the doctor to present (in person, of course) to the DMV until this week. So, I parked in the spot, got the wheelchair out, got Ava out of the car and into the chair, pushed her up to the sidewalk, got Carter out, had him stand with her, and then moved the car to a normal spot. What a PITA! The wheelchair accessible room is BARELY big enough, by the way. Actually, I'm finding it surprising how many places are handicap accessible, but BARELY. Like, the bathroom door that is just wide enough for a wheelchair to wheel in, but not to turn around in. I'm not sure how a person could wheel in, turn, close and lock the door, and get themselves onto a toilet. :/ A whole education on accessibility is coming with this journey, too.
Anyway, we ended up getting dinner at the hotel in the restaurant (for a hefty price) because I couldn't stand the thought of getting into the car and driving somewhere, getting out of the car, into a restaurant, leaving there, putting the chair back in and out of the car, etc. Too much work! Ryan and Carter left around 7pm to head back home. Luckily, traffic was sparse, so they got home a little after 11pm - and Carter slept most of the way home.
Ava and I slept in until 8am this morning and then it was time to get ready for PT. We had breakfast downstairs (free breakfast for the WIN!).
I had to figure out how to get her and the stuff she needed to PT. I ended up having to leave her sitting outside by the carport at the hotel while I drove the car up - the wrong way. The signs were posted 'do not enter', but I did it anyway because her seat is on the driver's side and I needed it up against the curb. LOL! Heaving the wheelchair into the back of the SUV was crazy. There is no way I will be able to do that every day. We're gonna have to figure something else out.
Anyway - we got to the hospital and I decided to valet the car just so I didn't have to deal with finding parking. The nice thing was that the valet guy totally got the chair out of the back for me! PT was fine and Ava worked on walking up and down stairs with a crutch. I am still somewhat dubious of that, but they say it's the best way.
We went back to the hotel and just relaxed most of the afternoon. Ava insisted on walking from the car all the way in and to our room (on the 2nd floor way at the back of the hallway).
It was still a tearful mess for shower and pincare today - I'm really needing that to start to get better. I can't deal with the anxiety and whining and freaking out over the littlest touch right now. She's doing so well for everything else....it feels like this is the last big hurdle and then it's just learning to manage PT appointments, the car, the bathroom, and daily living. Okay, well, maybe not the *last* hurdle, but it feels like the biggest one right now.
It's already gotten so much better in a week, I'm definitely hopeful that by this time next week, we will have adjusted home and worked out the kinks. Wishful thinking? Perhaps!
The plan for tomorrow is 1 hour of PT and then 1 hour of pool therapy and then we are hitting the road and heading HOME!!! :)
I hadn't told Ava that I was bringing him, so it was a huge surprise. She was SO excited and couldn't stop saying how it was the 'best surprise EVER!"
On Monday, we had to 'check out' of the Hackerman-Patz house. I didn't realize how long we would need to stay (apparently, there's not a hard-and-fast rule, so it varies) and they were totally full and couldn't extend our stay another couple nights. We called the 'child life specialist' a few times on Thurs/Fri and again over the weekend to see if we could get a room at the Ronald McDonald House, but she never called us back. I was a bit annoyed (okay, a LOT annoyed) that she couldn't be bothered to even return our phone calls. Even just to say sorry, we can't fit you in. We called the RMH ourselves, but they said that without a referral from her, they couldn't even tell us if there was a room available. Well, if she won't return our calls, how can we do that?!? Ugh. We ended up using the remaining points that Ryan has from his traveling a few years ago to stay at an Embassy Suites. We reserved a wheelchair accessible room, but it's about 25 minutes from Sinai. Ryan packed the car(s) while Ava and I were at PT in the morning and then he and Carter and his dad and Janet all came to see Ava in swim therapy. She's still working on stairs and getting better every day. She tends to 'cheat' on her counting - so someone kind of has to stay on top of her during therapy. The therapists are at a 1:2 or 1:3 ratio, so it seems like they are stretched a little bit. I don't know how they can really know if the kids are doing the appropriate number of exercises if they have more than one to monitor. Sunni will tell Ava to do 30 knee bends, but I think she isn't really doing them all.
Ryan was working remotely from Sinai that day, so it was hard to balance him watching her, helping us, and then also working. He happened to have a conference call he had to be on, so we got lunch and headed to the car. It would be Ava's first car ride with the fixator and I wasn't sure how any of that was going to work. We struggled and struggled to find a car seat that would work with her fixator and there just simply isn't anything out there on the market. Finally, one of the other moms whose daughter had this surgery a couple years ago said that what they did was buy a booster and cut the arms off. The thought had never even crossed my mind before! But it seemed like a simple enough task, so Ryan and his dad bought a hacksaw at the same time as they bought the car seat and went to fixing it on Sunday night.
Getting her loaded in the car felt really rushed on Monday afternoon, because Ryan had to hurry and get to his conference call and I was trying to fit everything in my car, while Carter was yapping away at me and I was trying to get Ava in her new seat comfortably. She did awesome getting in the car and we propped her leg up and she was ready to go. I was worried about the bumps, but she did GREAT. No pain! That made me feel very good about the plan to come home this week.
We got to the hotel and I realized that I had no idea how to manage her, the wheelchair, etc. because I don't have a handicap placard for my car!!! You have to get them in the state where your car is registered and we didn't get the paperwork signed from the doctor to present (in person, of course) to the DMV until this week. So, I parked in the spot, got the wheelchair out, got Ava out of the car and into the chair, pushed her up to the sidewalk, got Carter out, had him stand with her, and then moved the car to a normal spot. What a PITA! The wheelchair accessible room is BARELY big enough, by the way. Actually, I'm finding it surprising how many places are handicap accessible, but BARELY. Like, the bathroom door that is just wide enough for a wheelchair to wheel in, but not to turn around in. I'm not sure how a person could wheel in, turn, close and lock the door, and get themselves onto a toilet. :/ A whole education on accessibility is coming with this journey, too.
Anyway, we ended up getting dinner at the hotel in the restaurant (for a hefty price) because I couldn't stand the thought of getting into the car and driving somewhere, getting out of the car, into a restaurant, leaving there, putting the chair back in and out of the car, etc. Too much work! Ryan and Carter left around 7pm to head back home. Luckily, traffic was sparse, so they got home a little after 11pm - and Carter slept most of the way home.
Ava and I slept in until 8am this morning and then it was time to get ready for PT. We had breakfast downstairs (free breakfast for the WIN!).
I had to figure out how to get her and the stuff she needed to PT. I ended up having to leave her sitting outside by the carport at the hotel while I drove the car up - the wrong way. The signs were posted 'do not enter', but I did it anyway because her seat is on the driver's side and I needed it up against the curb. LOL! Heaving the wheelchair into the back of the SUV was crazy. There is no way I will be able to do that every day. We're gonna have to figure something else out.
Anyway - we got to the hospital and I decided to valet the car just so I didn't have to deal with finding parking. The nice thing was that the valet guy totally got the chair out of the back for me! PT was fine and Ava worked on walking up and down stairs with a crutch. I am still somewhat dubious of that, but they say it's the best way.
After PT, we went to have lunch with Cooper and his family. His surgery was exactly 1 week after Ava's, so he is still in that 'I can't do it' phase. But he's also a boy (and big and strong normally!) so I could see a little of the competitive edge when Ava started telling him the things she could do. He perked up and acted like he wanted to do them too. So she totally called him out and challenged him to a race. We went to the atrium area and let them wheel themselves around a bit. He wasn't sure he wanted to race, but quickly started having fun. They raced, they got out of their chairs and walked, and I really think it was good for both of them!
We went back to the hotel and just relaxed most of the afternoon. Ava insisted on walking from the car all the way in and to our room (on the 2nd floor way at the back of the hallway). It was still a tearful mess for shower and pincare today - I'm really needing that to start to get better. I can't deal with the anxiety and whining and freaking out over the littlest touch right now. She's doing so well for everything else....it feels like this is the last big hurdle and then it's just learning to manage PT appointments, the car, the bathroom, and daily living. Okay, well, maybe not the *last* hurdle, but it feels like the biggest one right now.
It's already gotten so much better in a week, I'm definitely hopeful that by this time next week, we will have adjusted home and worked out the kinks. Wishful thinking? Perhaps!
The plan for tomorrow is 1 hour of PT and then 1 hour of pool therapy and then we are hitting the road and heading HOME!!! :)
Saturday, June 21, 2014
Day 11: A good day
This is going to be a short one - with no pictures (gasp!) - because today was the first day I spent without Ava in quite a while.
Ava decided she *really* didn't want to take the oxy last night, against doctors orders. She hadn't been in pain all day with only taking Tylenol, so I agreed. Unfortunately, it went about the way I expected. She was awake and uncomfortable every hour or two nearly the entire night. Finally at 4am, I convinced her to take the oxy so that she could go to sleep and stay asleep. I think the extender bar stretches her more than she thinks - and sleeping on her back is still such an issue for her.
The good news is that she woke up in the morning feeling good and not sick at all! We all slept in a bit and I took some time to talk through all the things that Ryan needs to remember while I'm gone. I have a newborn session scheduled in VB on Sunday and I simply cannot put it off another week. We even got Ava showered and did pin care before 11am. She did really well today. Still very anxious and worried, but there were not nearly the tears and freaking out that there has been in the past. There was only one sponge that was 'stuck' (that pesky pin closest to her knee) so she did great getting the other ones off without too much anxiety.
Ryan, Ava & I played a game of Quirkle - which honestly was a lot of fun. :) And then it was time for me to leave. I admit to getting a little teary saying goodbye to her - and she looked at me funny, ha! - but made a hasty exit and got on the road. I know they will be okay for 24 hours.
Nana & Papa are still there, so I don't feel so bad leaving Ryan & Ava. I know that if he needs something, they can run to the store or get food or anything like that. Plus, they can give him a 'break' if needed. Makes me not worry so much while I'm gone for sure. I know Ava is having fun playing games with them - it's a nice distraction for her.
I ended up hitting nearly all the traffic possible from Baltimore to Norfolk....and I was so frustrated. I guess it was good to have 5 hours in the car with nothing to do but think and decompress. But since I hate traffic so much, it wasn't relaxing at all. I got to my moms and Carter gave me a big hug, which was awesome. When I put him to bed tonight, he said, "I love you, Mommy. And I really missed you." Kinda broke me up a bit.
I am thinking about taking him back with me tomorrow as a surprise for Ava. If Ryan can work from Baltimore on Monday, it might work. And I know she would LOVE that. :)
Ava and I FaceTime'd tonight at bedtime and I coached Ryan through her stretches. She is hopefully off to dreamland now....I'm sitting on my couch for the first time and it feels great. Can't wait to be home for good soon!!
Ava decided she *really* didn't want to take the oxy last night, against doctors orders. She hadn't been in pain all day with only taking Tylenol, so I agreed. Unfortunately, it went about the way I expected. She was awake and uncomfortable every hour or two nearly the entire night. Finally at 4am, I convinced her to take the oxy so that she could go to sleep and stay asleep. I think the extender bar stretches her more than she thinks - and sleeping on her back is still such an issue for her.
The good news is that she woke up in the morning feeling good and not sick at all! We all slept in a bit and I took some time to talk through all the things that Ryan needs to remember while I'm gone. I have a newborn session scheduled in VB on Sunday and I simply cannot put it off another week. We even got Ava showered and did pin care before 11am. She did really well today. Still very anxious and worried, but there were not nearly the tears and freaking out that there has been in the past. There was only one sponge that was 'stuck' (that pesky pin closest to her knee) so she did great getting the other ones off without too much anxiety.
Ryan, Ava & I played a game of Quirkle - which honestly was a lot of fun. :) And then it was time for me to leave. I admit to getting a little teary saying goodbye to her - and she looked at me funny, ha! - but made a hasty exit and got on the road. I know they will be okay for 24 hours.
Nana & Papa are still there, so I don't feel so bad leaving Ryan & Ava. I know that if he needs something, they can run to the store or get food or anything like that. Plus, they can give him a 'break' if needed. Makes me not worry so much while I'm gone for sure. I know Ava is having fun playing games with them - it's a nice distraction for her.
I ended up hitting nearly all the traffic possible from Baltimore to Norfolk....and I was so frustrated. I guess it was good to have 5 hours in the car with nothing to do but think and decompress. But since I hate traffic so much, it wasn't relaxing at all. I got to my moms and Carter gave me a big hug, which was awesome. When I put him to bed tonight, he said, "I love you, Mommy. And I really missed you." Kinda broke me up a bit.
I am thinking about taking him back with me tomorrow as a surprise for Ava. If Ryan can work from Baltimore on Monday, it might work. And I know she would LOVE that. :)
Ava and I FaceTime'd tonight at bedtime and I coached Ryan through her stretches. She is hopefully off to dreamland now....I'm sitting on my couch for the first time and it feels great. Can't wait to be home for good soon!!
Friday, June 20, 2014
Day 10: PT and R&R
We are still struggling with morning nausea. I am not sure if it is simply that she's exerting SO much energy just to get out of bed, go to the bathroom and get in her chair before eating a good breakfast or if it is anxiety related or if something else is going on. Yesterday, Ava decided she didn't want to take the oxy anymore - so the only dose she had was a half-dose right before going to bed so that she could rest comfortably. But today and tonight, she hasn't had any - only Tylenol every 4 hours. I don't really want to wake her in the middle of the night for it, but I might. We'll see.
So, this morning, we thought we'd see if laying in bed for a little while, munching on some cheerios would help settle her stomach before getting up and around. It was my first morning alone with her, so I got showered and was getting ready to take her to PT when she started feeling sick again. I was so frustrated. What is going on?? Why can't we get this under control?
So, she pretty much threw up the medication that she took - but I wasn't 100% sure of that, so I didn't want to give her another dose of Tylenol. Off we went to PT not knowing if she had any pain meds in her body at all. :/ From the Hackerman-Patz house, the Rubin Institute is literally across the street. But you have to go a bit uphill to get to the cross walk and then yell at about 5 cars that BLOW by on the street, completely ignoring the cross walk sign that clearly states "Maryland LAW - stop for Pedestrians". It should say, "If you don't stop for a child in a wheelchair and her clearly frazzled mommy who is pushing that child, carrying a walker, a water bottle, and a bag slung over her shoulder, you are a complete asshole." But it's pretty normal now for me to expect them not to stop. And then it's uphill again to get to the entrance. That's *my* PT for the day. Ha!
First hour PT was fine - she got to 45 degrees bend in her knee, which is not great, but (barely) passes muster. She really needs to be 60-70 degrees in order to sit without support on her foot/leg (and that will help with steps). But for a child with little to no pain medication in her, I was happy with those results. On to pool therapy. The prep for it today was much better. Ava took all the outside sponges off without really much fussing. We have to have everything off and rinse the pinsites before getting in the pool. She is very anxious about it, just like showering in general and getting them wet and pulling the sponges off...so I expected a bigger fight. But actually, it wasn't terrible.
She walked to the steps today and Sunni helped her learn how to get up them, sit down, and twist around to get into the pool and then go down the steps into the water. BIG PROGRESS!!
Unfortunately, it took us an HOUR to get from the point she got out of the pool to leave the locker room area and head back to the HP House. I was totally stressed and exhausted.... She did okay in the shower. I washed her hair and then put soap on the pinsites and rinsed it off. I wrapped her in towels and we were off to the back room to dry and put sponges back on. That's when things fell apart. There was another little girl there (who has fixators on both thighs AND both calves!) and they were doing their pin care and reapplication and we couldn't really navigate around them very well. I'm not as organized as they are - we've only done this twice now. There are two blow dryers and only one really has a low/cool setting, so we had to wait on that. And I really needed to get a few pieces of sponge off the lower leg pin and she was freaking out. They are still seeping a little and that makes her go completely crazy. Me trying to pick anything off a pin sets her over the edge. So it took us a long while just to slowly do all that. Putting the sponges back on didn't really take long - and she tolerated that pretty well, so I am hopeful for the future. It has to get easier/faster. I just can't take an hour of it. And she was so tired too after 2 hours of PT. :/
Came back to the room, ate a little something and she passed out and slept for 2 1/2 hours.
After that, we played more games in the room until it was time to get ready for bed. She started complaining that some of the pin sites were 'itchy', which I told her was probably a good sign that they were starting to really heal up - and maybe they'd start to look better soon too. It didn't seem to bother her THAT much, so we used heat and cool packs to help.
We've been waiting for Ryan to get here all day - he was hoping to leave work at noon, but that didn't happen, so he was set to arrive around 9:30pm and she was determined to stay up. So I got her to the bathroom, in her PJ's, and in bed to do her stretches. Pretty soon after, she got all teary that she 'Really, Really misses Carter." She started crying that she wanted to go home. Or why couldn't Carter come here to visit her. It was all I could do to keep it together. I saw Nana get up and walk away, so I don't think she was able to hold in her tears. I hate seeing her so upset and the 'I want to go homes...I miss Carter and Jo' stuff really hits me in the gut.
When Daddy finally arrived, I thought it would be a quick hug, chat and off to dreamland. Well, that didn't happen. She cried to him about missing home and Carter again but we got her extender bar in and she seemed pretty settled. They all left the room to chat and I sat by her bed to see if I could help her fall asleep. Well, the itching/spasms only got worse. I tried to get her to take the Valium, but she absolutely refuses. ("It tastes like the most horrible stuff I've ever tasted, Mommy!") so I sent Ryan a text to find the nearest drugstore and get some Benadryl. It took him a while and she just couldn't go to sleep. She said "This and missing Carter are the worst things" Finally she fell asleep about 11pm. She's going to be TIRED in the morning for sure.
Not sure how we can make mornings and nights better, but we need to figure something out and fast. All in all, it was a pretty good day. This evening was fantastic - her napping was great for her and she was happy and did well until bedtime. I'm a bit worried about leaving tomorrow for 24 hours. I need to get home, see Carter and do a newborn session on Sunday before driving back up. But I've really been the one constant here since day 1, so I don't know if I feel super comfortable about leaving. Hopefully it will go okay....
So, this morning, we thought we'd see if laying in bed for a little while, munching on some cheerios would help settle her stomach before getting up and around. It was my first morning alone with her, so I got showered and was getting ready to take her to PT when she started feeling sick again. I was so frustrated. What is going on?? Why can't we get this under control?
So, she pretty much threw up the medication that she took - but I wasn't 100% sure of that, so I didn't want to give her another dose of Tylenol. Off we went to PT not knowing if she had any pain meds in her body at all. :/ From the Hackerman-Patz house, the Rubin Institute is literally across the street. But you have to go a bit uphill to get to the cross walk and then yell at about 5 cars that BLOW by on the street, completely ignoring the cross walk sign that clearly states "Maryland LAW - stop for Pedestrians". It should say, "If you don't stop for a child in a wheelchair and her clearly frazzled mommy who is pushing that child, carrying a walker, a water bottle, and a bag slung over her shoulder, you are a complete asshole." But it's pretty normal now for me to expect them not to stop. And then it's uphill again to get to the entrance. That's *my* PT for the day. Ha!
First hour PT was fine - she got to 45 degrees bend in her knee, which is not great, but (barely) passes muster. She really needs to be 60-70 degrees in order to sit without support on her foot/leg (and that will help with steps). But for a child with little to no pain medication in her, I was happy with those results. On to pool therapy. The prep for it today was much better. Ava took all the outside sponges off without really much fussing. We have to have everything off and rinse the pinsites before getting in the pool. She is very anxious about it, just like showering in general and getting them wet and pulling the sponges off...so I expected a bigger fight. But actually, it wasn't terrible.
She walked to the steps today and Sunni helped her learn how to get up them, sit down, and twist around to get into the pool and then go down the steps into the water. BIG PROGRESS!!
Came back to the room, ate a little something and she passed out and slept for 2 1/2 hours.
Nana & Papa came back over when she woke up and played games with her until dinner. We ordered Chinese and I thought Ava ate pretty well. Probably about 50-75% of what she would normally eat, so that was good. After dinner, she wanted to try to play ping pong. I was very skeptical that she could do it at all. But boy did she prove me wrong. She had the BEST time playing ping pong with Nana. I have not heard her giggle that much or laugh and smile so big in...well, probably the entire 10 days we've been here. It was so awesome!
We've been waiting for Ryan to get here all day - he was hoping to leave work at noon, but that didn't happen, so he was set to arrive around 9:30pm and she was determined to stay up. So I got her to the bathroom, in her PJ's, and in bed to do her stretches. Pretty soon after, she got all teary that she 'Really, Really misses Carter." She started crying that she wanted to go home. Or why couldn't Carter come here to visit her. It was all I could do to keep it together. I saw Nana get up and walk away, so I don't think she was able to hold in her tears. I hate seeing her so upset and the 'I want to go homes...I miss Carter and Jo' stuff really hits me in the gut.
When Daddy finally arrived, I thought it would be a quick hug, chat and off to dreamland. Well, that didn't happen. She cried to him about missing home and Carter again but we got her extender bar in and she seemed pretty settled. They all left the room to chat and I sat by her bed to see if I could help her fall asleep. Well, the itching/spasms only got worse. I tried to get her to take the Valium, but she absolutely refuses. ("It tastes like the most horrible stuff I've ever tasted, Mommy!") so I sent Ryan a text to find the nearest drugstore and get some Benadryl. It took him a while and she just couldn't go to sleep. She said "This and missing Carter are the worst things" Finally she fell asleep about 11pm. She's going to be TIRED in the morning for sure.
Not sure how we can make mornings and nights better, but we need to figure something out and fast. All in all, it was a pretty good day. This evening was fantastic - her napping was great for her and she was happy and did well until bedtime. I'm a bit worried about leaving tomorrow for 24 hours. I need to get home, see Carter and do a newborn session on Sunday before driving back up. But I've really been the one constant here since day 1, so I don't know if I feel super comfortable about leaving. Hopefully it will go okay....
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