Alex's cardiology and May's well check!

Sometimes I become complacent. I always know Alex has a sick heart but I try not to worry all the time. A while ago I told Alex he was going to have a card appointment. He still gets upset over some of the little things. Tell him he has to have a shot and he cowboys up and takes it without a tear. Tell him he has to have EKG leads on and he breaks down. At this appointment he had an EKG,EEG, and an echo. The echo showed that his heart isn't functioning as well as it had been a year ago. He has been puffy in the eyes and face. His tricuspid is leaking quite a bit again. His liver is enlarged and lower in his abdomen. To try and resolve some of these issues we are tweaking medications. He will up his Enalipril and then restart his LASIK. Instead of waiting an entire year, we will make a trip back to see Dr. Su in six months. In the mean time we will watch him and hope for the meds to work. We will continue to teach him and play. Let life move forward.... On that same day, May had her 4 month well check.. Three shots, rotavirus oral, and stickers all around we headed home to try and find the medications we needed. I tried the RX by our Peds office and they didn't have one, then I tried SAMs and they didn't have it... I got smart and had them call around till I found it at Target. It took me two hours to wrap that meds business up. Between Gator and May we have quite the mix of meds. I tease sometimes that I could be a pharmaceutical technician after all the meds I have given and learned about. The math required would just about make me crazy. Weight to mg/ml based on strength, math is way to big for my brain. I can administer via oral, picc, g-tube, bottoms, air chambers and shots. Not too shabby for just a mommy.



 

 

May is growing, she is weighing in at 14 pounds 8 ounces that is the 52%. She is 25.5 inches tall which is in the 84%. She is a rolly polly and sweet as can be. She can roll and has found her voice and hands. I just happen to be her favorite person. She is a real momma's girl. Probably because I am her meal ticket. She wasn't able to have her MRI because of he oxygen usage. It will be this Friday. I am not really planning on it because it can change so easily. I already posted about my feelings on that business. Her Hemangioma is changing rapidly. It does not have any open sores and so we just have to watch it. She has been a little cranky this week and I think it has to due with all those shots. She fevered for two days after and one shot really bruised her leg. I am hoping she turns back into her sweet little person this week.




 

 

Mother's Day

This wonderful day used to be very difficult. That all changed after our Ryleigh came into our family. I loved celebrating my mom/mil but it was a reminder of what I wanted (to be a mommy) Then after Gator was born and still fighting in the hospital I finally got to hold him after waiting 21 days... I still remember how I felt before Ry and try really hard to hug and love women in general. Thankful that each friend/mom blesses my life regardless of if they have kiddles or not. Mother's Day is so happy now. My family makes me feel so loved. I got breakfast in bed.. So yummy! I also got some sweet gifts. I never thought I would love little homemade cards and pictures so much. I am so lucky and so blessed!

Talking to my missionary

My little sister is serving an LDS mission in the Santa Rosa, California mission. She is so amazing. Sister Clawson was called and reported to the MTC. Three days later she has a seizure. Preslee's medication wasn't working properly. After a week at home she was released and told that she could return after six months of being seizure free. I think I would have bagged the whole thing because I could easily say that this was a sign that I had clearly done what I needed and I did not need to return. But Preslee didn't give up, she exemplifies preserving. She took more church related classes, became a temple worker, and continued working until she became completely debt free. She went back to the MTC on my birthday. She has had a couple of seizures since going out but seems to smile through the scares.. As long as she doesn't hurt herself or anyone else she is allowed to continue to serve. On Mother's Day we got to talk to her over the computer!!! It was so fun to see he face and hear here voice. I am so jealous of the experiences she is having.


 

 

 

 

 

 

 

 

 

 

 

pagaent

My two little lovelies were part of the Tulip Princess Pageant. Ry loves Toddlers in Tiaras. I think it's all the make up, dresses, hair and bling. She really wants to be in pageants. I don't really feel like its a activity we can regularly afford. When I came across this little gem it was only 10 dollars to participate. That was within our budget and it would fulfill that little thing on Ry's bucket list. What a fun way for Ry and me to spend time together. Ry helped me design and sew her tulip skirt. She picked out all the elements of her outfit. Being the first time we have ever been in anything like this we didn't really know what to expect. When we got to the venue they had hair and makeup done by a local hair school. The girls also got a glitter tattoo and some fancy nails. It was a little scarier than we had anticipated, as far as our nerves go. I also tried to coach my daughter but later found out she could have done better without my coaching. She didn't win anything other than my heart. It was a good experience. She would like to try another one and maybe have a fancier gown. I will not help her with anything because she already knows better then me on this business.


 

 

These are all the little people lined up.
 

This is Grandma and helper for the day. I coulnd't have done it without her. 

 

 

 

 

 

 

A little confusing!!! Yeah, me too!!

Somehow the last post is out of order... This was almost two weeks ago.. So now May is off oxygen but can't do her MRI until the 24th of May!!

Mehh!!!

We wore our lucky shamrock outfit to the docs today.. It didn't help:( we are a little perplexed to why May still needs oxygen. She sounds great but we can't seem to ween her of the whiff!!! She really should have recovered already. She is on quite a bit for an other wise healthy kiddo. So our plan is to move past the virus and decide if she has hypertension. We are headed to cardiology. At least it is familiar. She will have an echo this Friday.. If we don't have hypertension we will look more closely at her lungs... With her MRI just around the corner I am going to try like crazy to keep her healthy!

Summer duds

Spoiled by her Auntie Lisha!!!

She always looks so big in photos so I put her Ellie with her to show how little she is:)