Some Happenings Happening

I know, witty title, right? Gotta give a girl a break, okay? I recently found out that I have sleep apnea. I will have to use a CPAP machine. For those who have no idea what this is, it is a machine that blows air into my lungs so that I do not stop breathing at night. I will pick my machine up on May 1st. At first, I was really reluctant about this. I never thought that I could or would have sleep apnea, but I did a sleep study at the beginning of March and let me tell you, the video that they show you with supposedly real people saying it was easy, they are lying. Lies all lies. One guy even said he slept better during his study than he does at home. LIES I say! The longer I have had to wait for the results, which happened in the beginning of April and now waiting to get approved for the machine, I have thought about this. Right now, my sleep is horrible. I mean I wake up so tired that I need a nap after I have been up for like two hours. Apparently, I stop breathing 30 times per hour and my oxygen saturation drops to 56%. Ya’all that is seriously and dangerously low. Your oxygen saturation should always be in the 90s. So, thinking about all of this, I decided that I am going to just suck it up and deal with it. I will use the machine. It will help me in the long run. 

I was on a good run of not being sick, but I got sick this past Sunday. I had a doctor appointment that had been scheduled for Thursday, so I guess it was good timing? I am back on the steroid taper again, I feel that should be a song sung to the tune of ‘On the Road Again’. Someone make that happen. I am also hooked up with an app on my phone and sensors on my inhalers that show when I use them. Right now, it is only on my rescue inhaler because they changed the size of my Qvar inhaler and the sensor does not fit on it. I have been hitting that rescue inhaler like it is an oxygen mask this last week. My asthma doc will not be pleased. The app is through Propeller Health. If you have an asthma doc, ask about it. The sensors were free, you just have to sign up and download the app, sign in to the app and they send you your sensors. You can also track other meds you are taking for your asthma too. It is pretty cool because I was looking for something like this to help keep me on track.

I have a massive amount to do with Social Security. I have to call them Monday and see if I can make an appointment for it all. I feel like it might be a day trip or something. Ugh. I do not like spending time in places like that because if someone is sick there I will wind up with it. I can not wait any longer, so I just have to deal and get it all done. The beginning of May is looking like I am not gonna have much free time at all, which sucks. The first three days of the month are totally booked. I was able to move one May appointment to June, so there is that. I am really tired, so I am gonna run. 

-Ciao!

Advertisements

Vindication Tastes Sweet

So, most of you know that I have been battling to get my son diagnosed properly. We had a blow to that process earlier this year, but that was trumped yesterday. I will take you behavioral psychologist and raise you a pediatric neurologist! I win! I know it seems petty, but when two (2) pediatricians with their own Autistic kids have BOTH said my son is Autistic and then this woman undoes all that with one report, it really irritated me. Especially when she notes some of his autistic behavior in said report, but no it is not Autism. It is Apraxia, something that honestly no one I have spoken to even knew about! 

Well, all this changed yesterday with our trip to San Francisco. We went to see a pediatric neurologist for Jeff because of the diagnosis of Apraxia. Which he does not have. He is Autistic and meets the requirements for being diagnosed as such. So, today with a letter from this neurologist in hand, I called the school district to get the process started. He has an appointment at 3pm there to be evaluated. 

Also, had to reschedule a WIC appointment because we were all so very ill and missed it. Which is that day but earlier. Charlotte starts her speech therapy on Monday and the Infant specialist is coming on Tuesday. Also, got her 2 years well check scheduled. Made a few other calls to get some information on help for a few things we need. Mike did well at his post office interview in West Sacremento today and now we are waiting on an email for him to get drug tested and his background check. We have to get Jeff some blood work done, some of it is genetic testing that is in depth so it will not be back for a couple of months. We are moving forward with all this stuff. Somedays I feel like I am standing in place though. I am so very tired and bone weary of most stuff going on. 

I missed counseling for 2 weeks because we were really sick and go back on Monday afternoon. I am so looking forward to that! I need to get back on schedule for my meds too because of nausea I had stopped taking them, so now it is time to start again. Right now life is busy and overwhelming. I need to run.. 

-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!

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.

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!

Oh Man Am I Tired!

Charlotte Swing First TimeI am so exhausted that honestly most days I have no idea what day it is or even who I am. At least until Jeff yells at me, but even then he does not say momma. LOL. Charlotte is doing well, gaining weight so now we do not have to go back to the doctor with her until January when she is 2 month old. We switched her formula to soy because she was very fussy and gassy. It seems to have helped some, but she is still very gassy and fussy sometimes, but it has not even been a whole week on the new formula, so I am hoping that things get better.

M is doing so well with physical therapy, they said he might be running by March again. I am so thrilled because that has been his serious goal. Once he starts running again he can get into shape again and pass a PT test for the Army he can pick up his 5 and then we can assess what will be next for us. He truly wants to go back to active duty and I am totally behind him on that. Once he has his 5 he only has to be in that rank until he can possibly pick up his 6.

So hopefully some good things coming in 2016, we could sure use them!! Jeff is really loving towards his sister and loves to kiss her. In fact, it is hard to get him to keep his hands off her when she is trying to sleep! He is helpful to me by putting the lid on the bottle and taking it off too when I need it.

Today Charlotte is in her swing for the first time. Not sure she totally likes it, but it gives my arms and back a break from holding her. I celebrated by taking a picture of course. I will post it here when I am done.

Well, my mind just went blank, so I will go… cause I can not remember what I wanted to say. Seems like normal for me right now.

-Ciao!

Doctors Doctors Everywhere!

Yesterday was my doctor appointment for my monthly check up to make sure everything is fine and the dreaded sugar test. I got there early like we always do when riding the bus and I sat and waited and waited and waited. My doctor was running late, which I understood so I waited patiently because honestly what good does it do for me to get upset? It just makes me and the baby out of sorts, so all the nurses were thanking me for being patient. LOL.

I had to drink 10 ounces of this glucose stuff and sit for another hour so they can take blood and if it was high then I would have to do another 3 hour test. For me, I have never had to do the 3 hour test, ever. I did not plan on having to do it this time either. LOL. Their blood pressure machine hates me. It never works right with me. So, I had to have my blood pressure taken 3 times and it was still kind of high. I told them that I was stressed about the sugar test because it always makes me feel terrible!

You can’t eat or drink anything for at least 2 hours before and of course the hour you are waiting on your blood to be taken. I stopped all eating and drinking a bit before noon and my appointment was supposed to be at 2:45 pm, but I did not get taken back until almost 3:30 pm. So yeah. I was a  hot pregnant mess after. LOL. M went to the closest gas station and got me a couple of bottles of cold water which helps right after. It flushes the sugar through the system quicker, at least in my case.

I have another appointment at the end of September, actually the same day as Jeff’s but earlier. In October I have to see an orthopedic doctor for my knee because at the beginning of August, I thought I just tweaked it a bit, but it has not gotten better, in fact it has gotten worse pain wise. So to be on the safe side, they made me an appointment to get it checked. M’s surgery is in 13 days if Amazon can get off their butts and get the paper work done.. If not and we have to reschedule, it might have to wait until after the baby is born.

Of course M has all the pre surgery appointments on September 8th and I am supposed to have my ultrasound done on the 21st too. I am thinking I might have to reschedule that because he would have just had surgery the week before that and might not be up to going anywhere or doing anything.

Oh, did I mention that I managed to schedule 2 appointments on the exact same day for the exact same time?!? Yep! I sure did! WIC and my doctor appointment yesterday. I am so glad that WIC called Friday to remind me of that appointment, so I rescheduled it for Sept. 10th. Then after I scheduled it, I got off the phone and could not remember when it was!! Baby brain strikes again!! So, I called this morning to find out and actually wrote it down this time and put it on the calendar. I also had to reschedule the ortho appointment for me because they had originally scheduled it for the day after M’s knee surgery at 8:15 AM! Are you KIDDING me?!?! Um, no.

The baby is doing well, and I have lost another 3 pounds between visits. Which honestly is a good thing. I am almost back down to the weight when I went in for the first appointment. I wish it was me doing this, but the baby sometimes, okay most of the time does not let me eat much. I think I have gotten to eat maybe 3-4 whole dinners in the month of August with out her pitching a fit! If I had been in shape and weighing what I was supposed to weigh in the beginning, this might be cause for concern, but since I started over weight, it is okay. Her heart rate was 135, which is perfect. She is the right size and all too.. so that is good news!

M’s parents will be here in October and we are excited!! Starting to count down the days! Of course I am wishing for fall weather now.. it would be nice.. but it still feels like summer here for now. Ugh. Well, I am tired and Jeff is kind of out of sorts today.. So I have to run!

-Ciao!