Monday, April 11, 2016
Hugs and Kisses! Megan at 10:18 PM
Friday, July 31, 2015
Last week was a disaster. Between me developing a corneal ulcer on my right eye. Which my eye doctor said could totally be brought on by stress. (HA HA!) I think that is why I pushed publish on the other post. I was carrying so my on my heart. However, I did not know that Chris was on the email list. (Hi Chris). I hadn't posted in so long I just didn't even think about it. It is double edged sword how I felt about him reading it. Glad that he saw that this has weighed heavy on me for a long time. Sad that I put stress on him because now he has seen it in black and white where my heart and head is. I know he is reading this too, and I am not going to censor myself. It truly helps me process to write.
I have been describing our house as a buzzing bee hive of stress. The girls, as much as we have tried to shield them, can feel it and have been acting out accordingly. Lily has been stemming HARD. Her anxiety has hit a high we haven't seen in sometime. Her fingers are raw, she is pulling her hair, and flossing, digging at her legs, pulling at her ears and very easy to tears. Normally we see one maybe two of these at a time, not several. Charlotte is hanging in there, but has been teary and clinging. I come home from work and girlfriend glues herself to me until bedtime. Last Friday we were able to get Lily into see her therapist for an emergency appointment. I will say that since then she has been maybe a smidge better. I asked her this morning before Charlotte got up how she thought the week went and she told me that she still had a lot of worries, and she is scared.
We have been honest with them that Daddy is having surgeries. We were going to show them youtube videos but, Chris watched them and yeah, nope. Too much. So we talk about it instead. Lily started asking about Chris dying. A lot. Like all day long. To which I always say, 'that's not the plan!'. Try to keep it light. But that is so hard when I want to say 'I don't know'.
We have a rough sequence of the surgeries for Chris:
The first will happen this coming Wednesday, August 8. This is the airway dilatation and laser surgery. This is what he has had done well over 60 times. They are going to stretch out his airway. This time they are planning on keeping him overnight. Currently his is only about 10mm, ours is more like 25mm. He struggles to breathe just doing normal things like sitting. (yes you do Chris ;-) He bought a pulse ox machine to keep an eye on his O2 levels in his blood, once after coming in from mowing the lawn it was 79. You loose brain cells in the 70's. To see it I think that was an eye opener for him.
The next will happen in late January. This is the 'one'. The one I loose sleep over. This is where he will have the bariatric sleeve surgery and they will place the trach. It is expected for him to stay in the hospital for about a week for this one. It is just a lot to process. Our lives will change while he is trach'ed. NO way around that.
The next will be to repair his hernia. This won't happen till probably late summer 2016.
The final (if they don't do it at the hernia repair) will be to remove the trach. If they can.
Last night Chris' emotions over took him. For the first time he let himself be upset. Really upset. In 20 years I have maybe seen him cry a handful of times. Last night he went there while we were talking after the girls were asleep.
We keep saying 6 months of hell for 60 more years. It'll be so worth it for him to be healthy. We just feel like he has to risk SO much to get there. The guilt that he is carrying because of that is east to see. Not that any of it is really in his control. He can't help the way he was born.
Here is some raw truth...
He doesn't sleep well.
I haven't been sleeping well.
This past week I restarted my anti-anxiety meds.
Chris is a mess.
I asked Chris last night what he wanted me to bury him in.
The girls are a mess.
Chris told me through tears that I had to let people help me if he was gone.
I am sick with worry.
I love this man deeper then anyone could ever love another person. To loose him is something, well I can't even go there. I just can't.
We have had those talks in more detail this past week. He did give me a gift of getting the living will in order. That was a fun talk. But at least I know that I will be following his directions.
Per Lily's therapist I have been trying to the find good in every day. That is helping (so are the meds). I just need to feel as prepared as possible. Not that I will ever fully be. But all of this is so out of our control I need to feel like I have some sort of handle on this. That is why we have had the talks we have had.
All of this has had some good.We are finding joy in the little things. Small everyday things. Like really watching the girls play. Making time for family dinners. We do laugh even with this enormous weight on us. But to say that I am not scared would be a lie.
Hugs and Kisses! Megan at 1:21 PM
Sunday, July 26, 2015
I wrote this back in Feb 2015. I just couldn't press publish. There has been some updates to this post and I plan to write again very soon. I have to get it out of my mind.
For a long time (2 years or so, by now) we have known somethings about Chris' long-term health. I am hoping that by finally blogging it I can let some of the stress/anxiety go. A little back story, Chris was a premie, he was born with Subglottic Stenosis. You can read more about it here http://en.wikipedia.org/wiki/Subglottic_stenosis. Not the MOST scientific journal, but it does give you the gist.
He was trach'ed at birth until he was seven, when he underwent a series of procedures to have a few of his ribs placed in his neck to hold open his airway. They nicked a vocal cord during and that is why his voice is diminished. Other then that it was very successful. He over his lifetime has had somewhere in the neighborhood of 70 procedures to keep his airway open.
About two years ago, while getting worked up for Gastric Bypass his ENT used very devastating terms to describe what could happen if Chris ever had surgery again. The ENT said things like living wills, discouraged unless extreme emergency, and catastrophic. He told us that in his opinion Chris' airway was much too fragile to support it. Beyond that, there were noted negative 'changes' in his airway since the last visit. We were blown out of the water. He had never been told that before. We were sent into a tailspin for sometime. He was dropped from the RNY practice, we tried another hospital with better ENT coverage, his ENT still said no. He saw top of top at Hopkins. No Again.
Now understand, because he has the airway he does, he can't just 'move more' it doesn't work. He cant get his heart rate up enough for his lungs to make the gas exchanges needed to loose weight. He has put weight on due to poor choices on top of that.
While all of this is going on Chris also has developed an umbilical hernia, it is large. He has had testing on it and it is fat filled. So that is good. But it has become a ticking time bomb. It is only going to take him picking up one of the littles for this thing to rip open. It is very large. I have taken on the heavy lifting, snow removal, mowing the lawn etc. He hates it. But there is not another way right now. RNY or no RNY he MUST have this surgically repaired.
That brings us up to the now...
He has found an ENT out of UMMC that will support the surgeries (hernia and RNY) but with one HUGE string attached. He has to have a temporary trach placed. Now this might seem like a win. And in a very small way it is. There are however a shit ton of cons.... Temporary really is zero guarantee that they will be able to remove it. Ever. If temp become permanent Chris' entire quality of life will be effected. He looses his voice. there would be no more camping, no more beach days, a lot of social anxiety, he would have to carry suctioning equipment to work. This would happen with the temp one as well, but we would counting down the removal. They will have NO CLUE until it has been placed.
Going even further, the Trach just allows the surgeries to happen. The surgeries themselves carry huge risk.
I have let myself go to some dark places.
What happens if I loose him?! The girls loose him?!
I cannot bury him. I cant. My heart breaks to type those words. I cannot. I would have to move Lily's therapist in.
He is a walking wreck. Hates to talk about it. I hate to see him so sad. We both have come to the conclusion that he needs to risk it, his body is working too hard. We are going to loose him early anyway if he does nothing.
We have had conversations lately that have been so sad. Truth be told. I didn't want to go back to work. I love being an at home Mom. He loves me being home. It works for our family. However, he wants me to be established. So off I go, with a smile on my face not telling my potential employer I am only interviewing because we have debt that my husband wanted paid off in case he dies. How terrible it that?! That is our truth right now. Is it sad that I want to not worry about the debt and plan a Disney trip, just in case. That this past Christmas he told me through tears that he was so afraid that this would be his last Christmas. What the HELL do you say to that?!
Of course the girls know NONE of this. They think Daddy is going to finally have the surgeries to get healthy and that is all they will know unless there is a need to bring them in. I guess all this worry and upset is for nothing because the Bypass/Hernia surgeon could still say no. But I don't think that will be the case.
He doesn't know that I cry a lot. I worry even more. I am so scared. All of my Google searches have to do with dealing with the loss of a spouse, how do you get you kids through the loss of a parent... He knows that he must have a living will made. Who wants to do that at 36 years old? With his family dynamic, he knows it will be blessing to have his wishes written out for me to just follow. I need to plan for the worst and pray hard for the best. Whatever that looks like. As far as I am concerned as long as he is still here he won.
It seems just so unfair. On so many levels.
I am so glad that I took the time to write this out. Sad as it makes me.
I just want see the future just 12 months from now and he made it through it all great. We keep saying 6 months for 60 more years. We can do this. He can do this. He has to.
Hugs and Kisses! Megan at 5:57 PM
Thursday, January 1, 2015
How does that even happen?! Blink the child is 9. Wow. How? When? But here it is. In the day and age of Facebook I don't blog at all anymore. But like every birthday eve for Lily I find myself thinking of her birth mom. Which brings me here tonight. Chris and I have chosen not to search. Still don't know how I feel about that, but Chris is adamant about it. I get and understand why he worries about it, as a mother I still don't know how to feel about it. So I will leave in the we-don't-have-the-money-for-it-now-anyway world. For now on her 9th birthday eve, I will make a list (I truly have a God given gift for it) of what I would tell 'A' if I could.
1) Lilliana is beautiful, not just a superficial beauty, but this child has a truly beautiful soul.
2) She is meant for great things. I know all parents think this, but there is something more to Lilliana. There is a light to her.
3) She is roller coaster loving, rock climbing, jumping in with two feet fearless girl.
4) She loves you. Deeply. God knows how she longs to meet you one day. She has been talking about you very often, again. We let her talk about you however it comes. Even when it is painful for her and us to feel/hear it.
5) She knows a lot about Guatemala. She loves to do Power point presentations about it.
6) Lily is a great big sister. She has recently become the little big sister. Something she finds pretty funny. Her little sister thinks that she hung the moon.
7) Lily struggles. I don't want to sugar coat it. It breaks my heart. Her Daddy and I chose to start an anti-anxiety medication this past November. She also goes to therapy once a week. Honestly I don't see much improvement with the medication, in fact it has made somethings worse. She has an alphabet soup of diagnoses right now. I don't know if it has anything to do with her adoption, or if the doctors are right and she is just 'hard wired' this way. Please know that her Daddy and I are doing everything we can to help her. We would walk to the end of the Earth for this child.
8) She has an operation coming up very soon. She has problems draining her ears so the ENT wants to put tubes in her ears and also take out her adenoids. It will sometime in the early new year.
9) Lilliana is a very loved little girl. By us, her Grandparents, GG's, Aunt's, Uncle's, cousins. She and her sister just light up entire our world.
10) She has a wonderful laugh. When she laughs she makes all of us crack up just laughing at her laughing.
11) She has started playing the violin this year at school. She is really seeming to like it. She just had her first winter concert and did a fantastic job.
12) Tomorrow for the first time ever she is going to go ice skating! We told her today and she is thrilled!
I could really go on and on, hopefully one day I will be able to sit with you and tell you in person how incredible our daughter is. From the very bottom of my heart thank you, for trusting in us to parent this amazing child.
Hugs and Kisses! Megan at 9:07 PM
Wednesday, December 18, 2013
Hugs and Kisses! Megan at 11:52 AM
Wednesday, January 25, 2012
This spring will be a funtastic time in our house. All 3 of my loves will be graduates! And I, the eternal planner, have already begun
stressing planning the festivities. But here is where my brain is stuck.... When Lily 'graduated' from pre-pre-school we invited the Grand and afterward we all went to dinner. Small and simple, more importantly she loved it. This past year when she really was a pre-school graduate we made a little more of a deal over it and invited the whole family, and had a little party here at our house afterward. Again pretty simple.
This year with all three of them having special graduations I want them all to feel as important as they are. I also do not want to overwhelm our families with non-stop parties/graduations. So far right now I was thinking of throwing one larger party for all three of them. I was thinking of doing it the weekend after Chris' graduation ( he graduates Mother's Day weekend) and then just inviting the family to each of the girls events. I found a really cute layout for an invitation for them. I know Chris does not mind sharing his spotlight at all with the girls, he actually prefers it. If we had a big party for the girls with no mention of him, he would love that- he's not big fan of people making over him. He has been put on notice that I fully heard him, and understand all of this. But, I am making a big out of this! :-)
I know it will all work out, and I also know that once I get the dates for things for me. I will relax some and then I can kick the planning into full gear.
Hugs and Kisses! Megan at 10:20 AM
Monday, January 23, 2012
I have a love/hate relationship with Facebook. Love it because it is easy to keep up with everyone, but hate it because it is too easy. A sentence here or there and that is it, no real story of what is going on. So while the girls are enjoying a new Barbie movie courtesy of her birthday money I wanted to update this blog a little. Let's start with the two most important girls in my world......
Lilliana, My word has this child blossomed in Kindergarten! We have been truly blessed with an awesome teacher, who just thinks Lily is just as awesome! She is in the top tier reading group, each day she is reading more and more. She has loved books from the start, but now it is just grown! There is one really funny story from school that I have to write out so I never forget. It was the day Lily's behavior card went to yellow, (dun dun dunnnnn...)!
Her teacher didn't say anything at the fence when I picked her up, and we had a normal ride home. We got home and the girls took off to their room to change out of their school clothes and put their book bags up. I had to use the bathroom. All of a sudden I start hearing Lily screaming 'I'm not telling you! I'm not telling you!' I opened the bathroom door and asked what in the world was going on. Charlotte appears to tell me that Lily has put herself in the closet and is crying. Insert more screaming from Lily. I finished up in the bathroom and went to find her in her room. She was in fact in the closet and had worked herself up so far I couldn't understand a thing she was saying. I tried to get her out, but after a few minutes I thought maybe a little less attention would be just what she needed. So I told her I was going into the living room and would be there when she was ready to talk.
Meantime, Charlotte (AKA chatterbox) is talking constantly, and informing Lily and I again of everything I just said (sigh) . I head out of the room and into the living room, and pretended not to be interested. After a few minutes she finally made it out of the closet and into the hallway. Still saying over and over again that she wasn't going to tell me, I was going to be mad. Finally, after what seemed like forever she made her way into the living room and s l o w l y starts tell me her story. Did I ever mention Poose has a flare for the dramatics? Apparently, she and her learning centers partner had a hard time paying attention, and after a warning to be quieter, they both went to (gasp) yellow! She was heart broken that this had happened. We had a long talk and she was told to tell her teacher in the morning that she was sorry for not being a good listener.
After I picked her up from school the next day, her teacher apologized to me for completely forgetting she ever went to yellow, because she never does. I told her teacher what happened the afternoon before and we both tried not to giggle. Ms. M did say that she is almost glad she did go to yellow, because now Lily knows what it is like. She did say that Lily came right in and told her she was sorry.
A few days after this happened I asked her what color she was, she answered ' Mommy I was one green, I am never going back to yellow! I didn't like that at all!'
There are so many more stories, I really need to do this more again!!
Oh Charlotte, Charlotte, Charlotte. God knew we needed more laughter- never at her expense. This child is so hard to discipline. She is walking the line of baby and little girl. She is a smart cookie and knows when to pull which card on us! She is in part-time preschool, and LOVES it! How do I know she loves it... she runs into the building everyday and does not look back. Just recently she started writing her whole name. She can write just about all of her letters now.
One her favorite things right now is make-up. She loves to do makeovers. No one is immune from a Charlotte makeover, Mommy, Daddy even the dog! She is just too much. They other day Chris forgot his lunch and I told him I would run it up to him while we were out, he walked up to the van and almost fell over. When I had gotten my shower that morning, I had forgotten to pay the extra attention needed to my right eyebrow. I had the Charlotte special makeover, meaning she got to use a little of my real stuff! While I had gotten most of the makeup off the night before I forgot all about my eyebrow. I looked like a crazy person! Thankfully Chris was our first stop!
Megan and Chris: We are in a good place. Chris is in his final semester! In May he will graduate with a bachelors degree in (let me see is I can get this right.) Global Business and Public Policy. I call it his World Domination Degree. He has decided to enter into the dual Masters program. Starting in the fall. I am super proud of him, he has worked so hard to get this done. May 12th is day he will walk across stage! This May/June all 3 of my loves are going to be graduates!
As for me I have been asked by a few people if I am going to journal about what is going on with me and the choice I made for myself. It will not be in this blog. I do plan to start another, for just me. Look for that soon. I will probably put a link on this blog to that one. It won't be private. I have nothing to hide. I am done hiding, and ready to live!
Hugs and Kisses! Megan at 3:36 PM
Wednesday, August 24, 2011
Not a creature was a flutter, not even a bat
All of the new supplies were placed neatly in her pack
It is so heavy I pray it won't break her back.
My big girl, no longer a baby, was nestled all down in her bunk bed
Goodness, I hope she doesn't wake up tomorrow with bedhead
And Daddy holding still, and I in a puddle of tears
Both sat on the sofa in quiet thinking it couldn't have been already five years.
Wasn't it just yesterday we were in Guatemala holding our new baby girl
Rocking slowly and running our fingers through her soft curls
It is like a dream how quickly the time has flown bye
To say I don't miss those early days, even the hard ones, would be a lie.
Tomorrow starts a new chapter in her life full of new stories yet to be told
I am sure some will make my eyes want to roll
She will be surrounded by new ideas, new pressures, new friends
Her Daddy and I can only hope and pray that her good heart does not bend.
But tonight I hope she sleeps well and has a beautiful Kindergarten dream
Tomorrow will come soon enough, and she will have to start walking on that beam
But her Daddy and I will cheer her on daily, catch her if she has a trip and fall
Just as we did while she was learning to walk and to crawl.
Looking at her now I can see how big she has grown
I know that she is ready, even if I am feeling quite blown
My dear Kinder girl tomorrow maybe a day that in your memories that might not last
Daddy and I will always remember it as the day that came too fast.
Hugs and Kisses! Megan at 4:25 PM
Friday, February 25, 2011
if she makes it to 5! Remember that commercial?! That is our Puddle through and through!
Well Charlotte has done it! She has now had more ER visits then she is old.
-July 4, 2008 Rolled off of our bed landed on her head-December 2008 uncontrolled vomiting, that turned bloody-June/July 2009 Respiratory distress related to croup-February 25 2011 Went to run to get a train tripped landed mouth first on our glider.
I felt a little like Tim Taylor this morning when we walked into the ER this morning.
Out of the now four trips, today's comes in a very close second to the respiratory distress. It was traumatic in every sense of the word. The initial injury wasn't so bad. Once we got her calmed down. It became the game of should we go to the ER or not. I hate that game. Finally we called her doctor she advised it better to have her looked at, if for no other reason then to make sure her tooth was ok. I could approximate the edges of the laceration on her lip, so I thought there might be a chance they should/would put in a stitch. I honestly thought they would tell us to keep it clean and make an appointment with the dentist. I couldn't have been more wrong.
She did ok with the doctor. The doctor did the same dance we did to put in one little stitch or not. Finally she decided that we should do the stitch, but there was a catch a BIG catch. The doctor told us that it would be better in the long run for Puddle if we just let the doctor put the stitch in, no numbing meds... Chris went pale. He already felt incredibly guilty because he was the one who told her to get the other train out of her room. Completely not his fault that she then tripped and fell but he still felt very bad. So to hear this, he just wanted to crawl under a rock and die.
The doctor was right. Numbing someone up for stitches is very painful and requires a big needle, plus the meds really burn. If we skipped that, yes it would hurt like hell, but it would be over quick and would only be one much smaller needle.
They also told us that they were going to have to papoose her, and that we could leave if we wanted. I couldn't ever leave them. Chris and I stayed but Chris stayed more in the back and helped the nurse hold her legs. I stayed by her face and tried to make it not so scary. The minute we laid her down she started screaming. That horrible make you heart stop scream. Thank God the doctor was good and fast and within two minutes she was back up.
She continued to scream and cry (can you blame her?!) and tell us 'those people hurt me'. She hit Chris directly in his chest screaming 'you let them hurt me!' Talk about ripping out our hearts. I kept telling her that we were so sorry and that it was all over. Chris made term arrangements to his new home... under the rock.
Before we even came home we stopped off for Motrin and headed right to the toy store. Chris took her by the hand and told her after going through all that she could have whatever she wanted! I thought he might have been kidding, oh no he meant it! LOL Thankfully, my Dino lover only picked two new dino sets. We showed her a few more things but she just wanted her little sets. In Charlotte style she had to hold them through the store.
So far tonight she had some pain when the Motrin wore off. When we gave her more Chris didn't put the bottle up high enough and about 20 mins later she walked back in the living room telling me it didn't work and we had to try again and her 'whip' still hurt.
We have to go to her doctor on Wednesday to get it taken out. I am going to keep an eye on her second top tooth, I think she might loose it before this is all over. We will have to see how that plays out.
Hugs and Kisses! Megan at 7:13 PM
Monday, February 21, 2011
I haven't blogged in a LONG time! There have been some great things in the past several months and some not so great things. The person I am going to focus on tonight is my Poose.
Life with Poose these past months has not been an easy one. Chris and I have been just dumb struck by it. There have been tears (hers and ours), rage, uncontrolled outbursts, terrible sleep patterns, horrible unfounded fear. We had talked to her doctor about at her well visit and she told us just to keep watching her. So we have been. Then this past Thursday her pre-school teacher took me aside and told me that she has noticed a shift in her focus at school. She said that she was 'drifting off' and her teacher was having to instruct her to do things several times before it clicked and she did them. This was the first time I thought that there really may be something wrong. Nothing fit though. It was a big ball of little things that were not adding up to anything.
Thank God this conversation happened that same day I had an appointment with her doctor because she was still sick. I again talked to her doctor. Told her everything that has been going on. Told her about the bruise that was left on her arm because she was trying to throw herself out of the van at Target. Chris was SO upset! I held nothing back. We aren't perfect either and I wanted to put it ALL out there. We needed help. Again she has told to watch her and completely ignore the tantrums (when we are home) and remove her from the store. Explain to her what our expectations are when we are out, ex. She agreed that it may be a bunch of little things that don't add up to anything, or it might be more. We just needed to give more time.
On the way from the appointment I thought about how we interact with Poose. I came up that maybe we might be babying her and needed to loosen up a little. We have given her a small list of chores. I was also thinking that she might also not being challenged in school and here at home. I asked her about really learning to read better. Right now she can with lots of help sound out a book. But girlfriend wants to read!! I told her that we were going to start working on that. She lit right up!
Isn't it funny that sometimes you just have to go to the doctor and you feel better? This has been Poose. She has been on point all weekend. She is still having sleep problems. That is just ongoing for her. I told Chris tonight that seems to have her smile back. There is this ease that is back in her face when she smiles. We are still taking everything a step at a time. But I think that whatever was haunting her is on it's way out.
I worry more about her then Puddle. I always have. The reason is a simple, I don't know what is in her past. I only have very basic information to go on, and that is saying it is even true. I look to far into everything. She has had a pain in her leg, it is off and on. I was sure there was something really wrong. She hasn't mentioned it again since her last well check.
I think there is a also a large part of me that still (4 years later) is waiting for the other shoe to drop. Chris and I have a family we didn't think we would ever have and we were given these two beautiful girls. I keep waiting for it to all be taken away. To wake up and find this was all just a dream. I am working on this. It is just hard to learn to relax.
I am just glad my big girl was given her smile back.
Hugs and Kisses! Megan at 10:09 PM