Crazy House and Crazy Life

So lately we have had a flurry of doctor appointments for the baby because it is coming (way, way too fast I might add) up to her first birthday! Charlotte’s first birthday this year is on Black Friday ( yes, I think it is some kind of cosmic joke that this has happened to me). I look at her and see how far we have come in this almost year, but it has passed so quickly I often wonder where it went! I know that most parents will say that, but for us, it is especially true because we have literally spent more time with her doctors, specialists, and other medical professionals than we have with her at home. For quite a while we were at a doctor office every two weeks or so. It was exhausting and scary. I am not sure I can even put what it feels like into words so that others can really understand it. 

In this almost first year of life for Charlotte, I have had more people look at me like I have not fed my child than I would ever wish on anyone enemy or friend. The feeling when people in a position to make that kind of call and ruin your life when you are doing the best you can for your child is to be trite, scary. It gets so that going to the doctor made me cringe because I knew inevitably we would get around to her weight or lack of it. When they weighed her, I would see the recrimination in the eyes of the nurses, until I started going through all the health issues we had discovered. Then the recrimination quickly turned to pity. I never wanted pity. I never wanted any of this. All I wanted was a healthy child, which I had no control over. So, I had to learn to deal with all the scary stuff. The every two weeks of blood doctor appointments where they would stick my daughter multiple times because they would not listen to me when I told them that she had fragile veins and that they would blow out easily. At one point, trying to get a port for a blood transfusion in, it was 7 sticks in her body. All the while she was screaming. I wanted to snatch her up and leave, but I knew I could not, so I had to sit there and deal with it. 

Our life has been so very difficult and crazy (there is no other word to describe what we have been through as a family) When Charlotte was just a month old, she had her first two blood transfusions. She and I were in the PICU for four days so she could be treated for her blood disorder ( in basic terms her body was not making enough red blood cells to keep up with the ones that her body was destroying, which is why she had blood transfusions). Her core body temperature was also 95 degrees, which caused some concern as well. So, for four days I did not sleep much and she was tested, prodded, and looked at. All. the. time. The nurses and doctors were amazing. She had an echocardiogram done on her heart in which they found that her aortic valve was abnormal. The eventual diagnosis is that she has a bicuspid aortic valve, which means she will have to be watched her whole life. She will also have to be monitored her whole life because of the blood disorder as well. 

She is amazing. She is a fighter. She is my hero. My 10-month-old daughter has had 8 blood transfusions so far and she may need more in the future. Right now she is holding steady. She has begun to make her own red blood cells finally and that is a miracle for me. 

See, we also have a 2-year-old son, Jeff, who has never been sick outside of a two-day fever when he was teething. So the stark contrast between brother and sister is sometimes overwhelming for me. I know that this almost year has forced him in many ways to grow up more than any 2-year-old should have to. He does not understand that his sister is very sick or was. All he saw was she was getting all this attention. He now has a speech delay that we are currently trying to work through. I am going to get him evaluated in November. 

To say that M and I are exhausted is putting it mildly. Charlotte finally started sleeping through the night about 9-months-old, but it is not always the case. I have a wonderful husband who gets up with her when she wakes in the middle of the night. So, I can get sleep because I am a stay -at-home mom. I lucked out in so many ways with M. He is amazing and my rock. Our anniversary is coming up this month, we will have been married for 1 year. It is a hell of a first year of marriage let me tell you! 

We struggle so much every day. With normal stuff. Just getting food into the house mostly. See, we have tried to apply for help but apparently, we make too much money where we live now. We barely make it every month. Sometimes, we don’t and something has to give so we lose phone/the internet or electricity. It is hard. M’s family is amazing and they help us as much as humanly possible but they have trouble too. I am not saying this to gain pity or so people will feel bad for us, that is just how it is. I made myself a promise that when I started this blog that I would be honest and show good and bad here. 

Charlotte is doing amazing these days and we have come far! She is now a whopping 17 pounds and 25 and 3/4 inches long. She has recently moved up to her big girl car seat. She is going to physical therapy and learning to crawl. We are not there quite yet, but very soon!! I am so proud of her and us as a family. We have not given up. We keep moving forward no matter how hard things get. The picture below is where we came from. 

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This is Charlotte under the lights after birth in the NICU

The picture below is where we are now.

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This is Charlotte stretching in her bouncy seat. 

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This cute boy is Jeff.

I love my family with all my heart. We have been through some rough times, but we are getting through them. If you have prayed for us or thought good thoughts for us, thank you. We appreciate it. We will definitely need more in the future. Well, it is lunch time and my boy is asking to be fed! Gotta run!

 

-Ciao~

The Misfit Military Wife & Mother

Murphy’s Law says that what ever can go wrong WILL go wrong and let me tell you, this is the definition of my life the last week! M left for the summer Drill A.K.A as AT (Annual Training) and all hell broke loose, literally! Let me see, the A/C quit working, the water pressure died, the people who came to “fix” my bathroom floor did not show up until 5pm and then ripped out said bathroom flooring and put new, different flooring down. The notice I got pretty much said they are coming to fix the floor, make sure to crate your animals, yadda, yadda, yadda… Oh yeah and then in the middle of the night one of the closet doors where the washer and dryer are fell! Let me tell you that scared the bejezus right out of me!

Not to mention that , my oldest Jeff woke up sick today. He has thrown up twice and for a kid who never has been sick in his whole history he freaked out! So, dealing with normal things, Charlotte, a sick kid, trying to get the laundry started at least, trying to get the trash out (which in our dumpster should be an Olympic Sport for me!) I am also trying to keep my sanity because it is just me dealing with all this until a week from today!

Not only that, I am trying to figure out how I am going to have an amazing dinner for M when he gets home after having to eat Army food for two weeks! I have my plate so full it runith over!! I have not been sleeping well because Charlotte wakes up in the middle of the night sometimes, so I do not let myself hit deep restful sleep right now.

Oh the toast just popped I have to run!

-Ciao!

Truly Chaos For the Moment

Okay, so let me start with current events, M has gone to National Guard training leaving me home with both kids… alone… yeah.  We had a hard day that first day he was gone (Aug. 6th.) but things got better the next few days until yesterday on the 10th. Then I had a mothering melt down literally. So many things at play yesterday. And then trying to get Jeff to sleep and the A/C quit. I called the after hours number because it was almost 11 pm and 80 in the house. They called back in like 5 minutes and were out here in about 15 minutes in the dark with a flashlight. It was fixed by the time he left at 1 am. Laid down, Jeff decided to almost roll off the bed at about 2 am and when I moved him he started screaming and woke Charlotte up. Gah! So, I got up and made her a bottle brought him up on my lap and rocked him back to sleep, it is now almost 3am. I laid him back in bed turned on Daniel Tiger’s Neighborhood (Thank God for Amazon Prime!) and told Jeff I would be in as soon as I could be.

Went back out and tried to get Charlotte back to sleep, which did not occur until about 4am. She was rolling over in her bouncy seat (her new trick) every five minutes and I had to flip her back over like a pancake because she would start screaming! On and on.. Finally in bed at 4ish am and then Charlotte wakes up at 7 am and did not go back to sleep until almost 9 am in which case Jeff was already up. So this momma got 3 hours of sleep and I have no idea how I am even still upright at this point, I am praying that they both decide to take naps today cause I could sure use one!

Something I have not really talked about here is my adoption journey. Before I had Charlotte M got me a Ancestry DNA kit because I was wondering what ethnicity I was. I wanted to be able to tell the kids what I was, so they had the whole picture. Well, that actually put me in touch with a biological cousin and her family. It looks so strange to me to even type the preceding sentence at all. She has been helping me track down my biological parents because I am a huge mystery in the family as it were. So, for all of you keeping score, in my adopted family I am the black sheep and in the biological family I am a mystery! LOL. She has gone through and compared my DNA, her DNA, and her sister’s DNA line by line.

We have narrowed it down to about three people who were in the right area at the right time, now we are looking for records to back it up. So, I have been on a mission most of this week and on the phone a lot! A roller coaster of emotion does not even really begin to cover it. Some of the original information that I was given back in the 1990’s turned out to be totally false and I am wondering why someone who did not know me from Adam would tell me such a lie. Anywhoo, I digress… I was told that my adoption records were destroyed in a fire at the Children’s Services building. The only thing wrong with that information is that fire happened in 1907. Yea, nothing to do with me or my records. So, a wall of sorts, but good news is that my records exist someplace!

Called the heath department and a very nice lady directed me to another health department in the capital of Ohio, called there and got a guy who sounded really unhappy with his job choice (my inference, he did not tell me that) he directed me to a web page with information on how I could get copies of all the paperwork in my adoption file. So, I have an answer and a way to get the information that I need. I am overwhelmed because I am doing this all on my own right now and I have to be the only parent to the kids at the same time. Needless to say my mind is in other places and that is where the trouble starts.

We are having a better day today. We have the living room almost totally cleaned up. Jeff has been a huge help with that! I am so tired. So, I have been through the ringer since Monday basically and it is only Thursday and M is not back for another whole week!! Life is crazy right now and I am on a roller coaster! I guess I can scream through the ride or throw my hands up and try to enjoy it…

-Ciao!

So Much Happening Over a Short Period!

Okay, let me go back real fast and see where we left off, you have time to grab yourself some tea and get comfortable.  Okay back! So, Since we last gabbed on June 18th, a lot has happened! Our apartment was recently renovated ( the 28th as it happens.) That day was LONG. Luckily the renovators let us have until noon to leave as we had stuff to do anyway, but the days leading up to that were both tiring and frustrating too. We had to remove everything from the kitchen counters, under the cabinets, out of all the cabinets and drawers, top of fridge, everywhere. We also had to remove everything from the bathroom, counters, cabinets, towel bars, shower curtain, medicine cabinet, everywhere. Then without telling us they changed the day that the appliances were being done, which originally was the 29th, so we had time to get a cooler for the food and empty the dishwasher, um, not so much. They decided to do that on the 28th too, with no warning. Ugh. We came back about 5 pm and they were not done, so we went to dinner ( we had that planned anyway) and come back by at 7:30 pm and they were almost finished, so we took Jeff to his second park of the day. We got home from that at 8:30 pm and they were gone.

Jeff got new shoes and sandals, which he desperately needed! He is wearing a size 8 1/2 – 9 now!! His shoes were a size 6, I felt so horrible because the day before he was crying that his feet hurt!! I should say so! There is no Stride Rite in the mall here anymore, but we found a fantastic shoe store not far from the mall and they measured his feet and helped us find some great shoes! I can not say enough about Howard Curry Shoes!! They were just totally amazing!

After shoes we went to Wendy’s down the way a bit for lunch, I had not had Wendy’s in a while and enjoyed it as did Jeff, it was his first time! We stopped off at Walmart to grab some baby water for Miss. Charlotte so I could have a good amount of bottles, we just brought a can and half of formula with us and all the 8 ounce bottles we had because we did not know how many we would need and how long we would be gone for!

We went to the first park of the day after that, it was about 2 pm by this time and Jeff’s First Steps appointment was at 3 pm but we were not that far from where it was. He did amazingly great all day Tuesday! The appointment for First Steps is for a speech delay and they did a hearing test there, he totally passed that, but because of Miss. Charlotte’s issues with hearing, they wanted a more in depth hearing test which will take place on July 25th. We got him all signed up there and I have to go through all that stuff and re read a lot of it.

We went to Golden Corral for dinner because, we never really know what exactly we want and this gives us so many choices! Jeff ate quite a bit and had some milk and because he was so good all day he got dessert! He had a chocolate chocolate chip cookie and three gummy bears, which he loved! Of course it was so hot that day and our car does not have great A/C or honestly I do not think we have A/C at all. With all the running around, Jeff did not get more than maybe a 20 minute nap but still did so good.

The last couple of days have been spent putting the house back together. I have a few more things to get finished, but washing all the pans and stuff that had renovation dust on them, so of course that takes like 2-3 three times longer. I was not going to do much today, but got 3 boxes emptied and more dishes done. I still have to make dinner tonight, but that is not a big deal because we are having meatball subs and French fries for dinner so easy peasy dinner. Which is what I had planned. Last night I had originally planned to eat out again, but I made home made pizzas instead.

There is one blind missing in the kitchen and apparently it is a special order and it is not in yet. They are hoping either Friday or Tuesday, honestly I am hoping for Friday.. LOL, but not holding my breath though.

Oh July 5th Miss. Charlotte is going to the hematologist to be checked and possible blood transfusion. So, that will be a long day for M as he volunteered to take her so Jeff and I could just sleep in!  I have an MRI coming up on July 18th.. Not really looking forward to that.

Miss Charlotte did go to her post op appointment and they want to see her in 3 months and then she needs another hearing test (ABR) at 12 months. I can not believe how fast this year is flying by! Last year at this time we were getting ready for the In-Laws to visit in October! M and I have almost been married a whole year! Good gravy!!

Well, I need to run and empty the dishwasher for the 100th time!

-Ciao!

Enter No Pain Relief…

Most of the people I have known for longer than 5 minutes know that I have suffered from horrible, painful, sometimes debilitating migraines. For those of you who do not suffer from these horrible things, I would not wish them on you ever. I finally got M to quit saying he has a migraine when all he has is a headache. He never understood the difference, he thought, like many do that migraines are just bad headaches. They are not. Migraine is a neurological disease. I am new to this concept myself.

I switched meds recently after a phone call from my neurologist on last Tuesday. He called on a day where I had a level 10 migraine. I could not focus on our conversation. I forgot what I had already said to him and repeated myself several times in the span of a five minute conversation. So, much so he wants me to get an MRI done to find out why my migraines have changed so drastically after the birth of my daughter, Charlotte.

Some days my pain is manageable. Of course my manageable and yours might be slightly different. I am able to function with pain up to a level of about 8.5 or so. Now, that does not mean I am doing things well. I am not, I am just barely able to get things done. When I am at this level of pain, my brain is in a severe fog and I will forget what I am supposed to do or even what I have done already. Even if it has been only about five minutes. For me, the brain fog is the worst thing ever because I pride myself on my memory and the ability to know what I need to get done. Some days, honestly, I can not remember my own address or phone number.

Some of my other symptoms of my migraines are: sensitivity to light, sounds, smells, and even it can hurt to touch me. Lately, I have been dropping things more than usual as well. Which kind of is a bad thing when you have an infant who can not get from one place to another without me picking her up and moving her. Those times, I take it nice and easy making sure I have her wrapped in my arms and not in my hands. I also have been more clumsy than usual , tripping over my own two feet more than normal, tripping over small things that normally would not bother me, and tripping over nothing essentially.

There are days that I make it through the day okay and I seem okay and then there are those days that I made it through the day and wonder how on Earth I made it through. We are supposed to go grocery shopping this evening, doing that for me depends on where my pain level is at that point. It is not unusual for me to not go at the last minute because my head hurts so bad I can not take it. Sometimes, I force myself to go anyway and those days are horrible.

I feel bad for my kids because most days I am not the fun mom. My kids are too young to understand what is going on with me. My two year old does know that sometimes mommy is in pain and he will rub my head to make me feel better, which makes my heart melt and breaks it all at the same time. Today I have to wash the comforters on the bed. It has been a while since I have done that. The problem is that the wash cycle is forty-five minutes long and I will forget what I was doing and it will sit and get all icky smelling.. so I have to try and focus on that. It is hard to do when you have two small kids needing stuff all the time..

Laundry is calling.

-Ciao!

Update on Doctor Appointments

So Charlotte went to the hematology doctor on June 6th and we were at Lexington Hearing and Speech on the 7th. Her red blood cell count was 9.1 so we are holding off on the transfusion for now. She has to go back in 3 weeks for a blood check and a possible transfusion. We also have to go back to Lexington Hearing and Speech the week after to get Charlotte’s hearing aid and I have a neurology appointment on the same day at 2pm. I tried rescheduling and could not until August 30th and that is just way too long for me to wait.

The hearing aid we are getting for Charlotte is similar to the one in the picture, but not exact. That is the exact color I picked out and the plastic part that goes into her ear will be clear with hot pink and purple glitter. I picked the brightest colors that we do not have a lot of in the house. So if we drop it it will be easy to see.

phonak..

July looks to be a horrendously busy month for us. I got Jeff into a program that will evaluate him for a speech issue at the end of June. I am so glad that the doctor at the hearing place gave me the number. I got a lot done today, I called insurance for some stuff, found the preferred drug list for my plan and downloaded it so I can print it out to look at it. I also am getting myself a case manager for my asthma and migraines.

Well, I need to run for a while, but I will add the latest photos of the kids. 

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So Much Going On…

13322147_10154176154503350_2458884458488236793_nThere is so much going on I am going to try to get it all in this one entry. So take a break, grab a drink and relax, this could get a bit long… LOL.

First of all, June is Migraine Awareness Month. I am happy/sad to be talking about this. If you see someone wearing a migraine awareness shirt please ask them about it. We want to tell our stories and be heard. More than that we want people to understand what migraine is and not. I will try to get a fact post in this month for all you out there who don’t know what they actually are and what happens.

Secondly, Charlotte did well with the surgery last Wednesday. We ended up being admitted for a blood transfusion that day too. Luckily we did not have to spend the night. So now she goes back to the hematologist on the 6th of this month for a check and possible transfusion. When they tested her last Wednesday she was at 7.7 for red blood cell count. Which is not super low but below 8 so her doctor wanted to transfuse. Considering that her last check was March 17th and we made it that long with out a transfusion is progress but we are now back on every 2 week check schedule.

Today is her 6 month well check and shots. She lost about 7 ounces again so that will have to be addressed, but I think once we start her on solids she will start to gain weight like a champ! We are supposed to get the O.K to start that today too. So today is exciting!

On the 7th of this month we have to head to Lexington Speech and Hearing Center to have a consult on a hearing aid for Charlotte. While she did well with the surgery, it did not clear up the issue on the left side. So, this is the next step for her before she starts learning to talk.

Our June calendar is filling up more than it was already! I am supposed to have a chat with the neurologist tomorrow and I am not sure he will like what I have to say and honestly I am not sure I will like what he has to say to me! I will try to update tomorrow after that conversation 13344618_10206964912266245_9072397591098437694_nhappens and let you know what happened and what will happen going forth.

Jeff is doing so well! He is growing by leaps and bounds! Speaking of which he can now climb on and off the bed by himself! He also has started to jump, so now he thinks that is so cool he does it every where! It is cute to watch. He is getting so big and learning so much. I am just beside myself because I am wondering where my little boy went!

Jeff and Charlotte love to babble at each other, it is so cute to watch. I will try to get some video of it happening. It sounds like they are having a whole conversation sometimes!

M is doing well. He has gone back to work and is back at Drill. In fact we have had (2) 3-day drills that went so much better than I could have hoped for. I am glad for that considering AT is coming at the end of summer and it is for 2 weeks! We will be fine though and by then hopefully everything will have settled down medically with Charlotte and all.

Well, I think that is all the news for now.. At least that I can remember at the moment anyway!

-Ciao!