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!

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!

Neurologist Visit

Yesterday I had my neurologist appointment. Finally. I waited months for that appointment and I sure was not going to miss it! My neurologist was sort of surprised to find out that I have had a migraine for five months. Every single day since Charlotte was born. Ugh. Before that it was at most 3-4 times a month. We discussed what my headaches feel like and look like. All the symptoms that I have with them. We talked about the medications I have tried, which is not many recently. My issues with migraine medications is that most of them make you zombie like or knock me out. I can not have that with the kids being home with me. I made that totally clear yesterday and we settled on a plan for the short term.

For the next month I am on Topamax 25mg for the first week, it is one pill at night. After the first week, it is 1 pill in the morning and at night. The office is to call me in a month to find out if it is working for me or not. If it is not we have talked about admitting me to the hospital for 2-3 days and giving me IV drugs to break the cycle. I am hoping to avoid that because honestly, yea. I am to the point that honestly I will do what ever it takes to get rid of this migraine or series of migraines. I honestly have no idea what it means to be headache free. I have no idea what it is like to wake up in the morning and feel good anymore.

I am so tired of being reactionary when it comes to these headaches of mine. Let me be clear, I have been diagnosed with migraines. Unless  you have specific symptoms that come along with the headache, you have a headache and there are different kinds, but you do not have a migraine. One of my pet peeves is that someone who has not been diagnosed will say, oh I have a migraine. No. You have a headache. If  you can take over the counter things, most likely you have headaches. Although Excedrin Migraine is pretty good, but it only works for me if I catch it really early.

I feel bad for my kids because they do not understand that mommy has migraines and is in constant pain. I want to feel good again so that I can do fun things with them. I have basically forced myself to keep moving because no one else is here to do it. I wish I could pull the covers up over my head and sleep it off. On the good side, I have lost 5 pounds. I am so hoping that Topamax is the right medication for me.

Tummy Troubles

It has been a while since I have been here and honestly we have been uber busy with doctor appointments. Charlotte is having surgery on May 25th to get tubes in her ears to help drain the fluid on the left side. She has failed every single hearing test she has had on the left side since birth. Tubes to me are not a big deal, but the putting her to sleep part is, she is so little. Not sure how the anesthesia will affect her. Also, once they get the tubes in they will give her a final hearing test, if she fails that one, it is likely she has nerve hearing loss from the jaundice she had at birth. The doctor told me that kids with severe jaundice have much more likely chance to have nerve hearing loss. If that is the case, then we will have to discuss hearing aids for her.

The reason for the hearing aids at such a young age is because she is developing speech patterns now, so if she is deaf in one ear when she starts talking her speech patterns will not be correct and then we will have to go to a speech therapist. So, hopefully all this works out for the best and tubes work right away.

We had to change her formula again. She is having serious gas issues and still spitting up at 4 months old. If this formula does not work there is one more we can try. I am hoping that this works but so far she is still spitting  up after almost a whole week on the new formula. We might have to go see a pediatric gastroenterologist. We are ruling things out one at a time, which is good, but frustrating!

Jeff turned two last month and he is amazing as ever, although some days extremely frustrating! He is definitely a two year old! We have good days and bad days with that and it sometimes seems like more bad than good lately. Hopefully, it will calm down soon.

M was released from physical therapy. He is happy but was frustrated too. He only had four months of physical therapy after surgery. Monday we are going to run some errands, one of is to get the documentation that he can return to work. We also have to take some of the unopened formula (the soy) to WIC to trade for the new formula. Also we have to go to the armory to get paperwork for the basic housing allowance for when M is gone to AT (annual training) for two weeks in August and then for three weeks in November he will be gone for three weeks for something else. Ugh. Not happy about that, but not like I can make them change it either.

So, keep your fingers crossed that the new formula works and everything is fine with Charlotte! I need to go do battle with the 2 year old, which me luck!

-Ciao!

A Crazy Week!

I know I have not been here much lately, I will tell you why. Charlotte was in the hospital. She was admitted on Monday and we got home Thursday night. She has the blood disorder I have and her red cell count dropped to 6. It is supposed to be 10 or more. She lost a lot of weight and the doctor was really worried about it. She was sent to the hospital immediately.

While in the hospital she received two blood transfusions and that helped a great deal. She is still on high calorie formula so she can rapidly gain weight because she is underweight right now. I was so worried I could not think straight. I had my lap top but I had to process what exactly was happening with us. She now has hematology appointments and on the 3rd she has her hearing appointment as well. Monday she goes to the pediatrician. So, this is about to get so busy. We are hoping to keep her red cell count  up, by herself. However, if she can not then she will need more blood transfusions. The hematologist will not even think about removing her spleen until she is at least three years old.

She still has her heart murmur and that appointment is in March. We will be at the hematologist every week for a while so they can monitor her. When we left the hospital her red cell count was 10.5, which is where it should be. We will test her on Wednesday to see how far if any it has fallen so we can see the rate that the red cells are being destroyed.

I am exhausted and still worried, but she has some really great medical professionals in her corner. I will try and get here to update on Wednesday after all the appointments have been done.

I need to run, it is time for her to eat!

-Ciao!

I am Tired

I am so tired of not being able to sleep well lately. I just can not get comfortable and the heart burn is horrible every single night. I wake up from a sound sleep some nights with horrible heart burn. Not to mention that I am constantly hot. I am always trying to leave the A/C on, but since tonight it is going to be down into the 30’s I have the heat on so the family does not freeze over night. I am sitting here typing this and I am HOT. I would love to open a window or something but do not dare. 

I am so tired of doctors. In the week of Thanksgiving, I have 2 appointments on Monday, M has 2 appointments on Tuesday, we have an appointment on Wednesday, and thank God that Thursday is Thanksgiving and all my doctor offices are closed on Friday. I am due 12/6 which is fastly approaching and honestly I can not wait to sleep. 

I am going to go and try to lay down.. I am so tired. 

-Ciao!

 

Lately

You know that lately I have been not able to eat much, well, it has caught up with me. There have been times, few and far between where I could eat an entire meal over the last month or so. This morning I woke up with no voice and feeling like garbage.. Actually, I am pretty sure garbage felt better than I did. Originally I had a dentist appointment today but I had to have M call and cancel it because of the no voice thing.

Fast forward to about 1 pm today, got my voice back, but still feeling and looking really bad. M had to go to the VA to pick up medical records for his pay when he is out for surgery. He has to be at the armory tomorrow so it was just easy for him to get them today to turn in tomorrow while he is there. We had told the place we live about a leak in the closet where the hot water heater is about a couple of weeks ago and no one showed up to look at it. We think it is coming from upstairs, but is dripping into our apartment.

Well, M took some pictures with his phone today and took them to the office. In about 5 minutes, (before he could even text me that they were actually coming) 2 maintenance guys showed up at the door. I am pretty sure that I scared them! I am pretty sure I even saw one visibly flinch! LOL. I wish I felt bad about that, but honestly I do not I am not feeling well and pregnant and not to mention I have an almost two year old to deal with while feeling this way! Sorry, but this is what REAL parenting and pregnancy looks like!

On another note, I finally have a firm date on when M’s parents will be here and we are all excited! We will be getting married on either October 15th or 16th depending.. I can not wait! M’s surgery is on September 14th so prayers and good thoughts are appreciated, he is having his ACL repaired finally!!

Lots going on in the next few months!! Oh man, I am tired… Wishing Jeff would go lay down for a nap, but it is almost 5pm, so probably not. Sad smile 

Gonna run…

-Ciao!