Slight Change in Plans

Since so many of you have shown your support with words of encouragement and following us on our journey, I wanted to let you know there has been a slight change in plans for our Superman. In 9 days, Alexander will be going into the catherization lab. His procedure was moved up a week because of insurance needing approval, in which case his cardiologist was fine with moving it up a week. So May 6th is the day. The emotional stressful day. As of now, a stent will be placed in his ASD. If plans change, we won't know until we get closer to the date. We are really trying to minimize his germ exposure to keep him strong and healthy, therefore, Alexander is in quarantine until then.  However, we've been on a few walks and had lots of snuggles!

To make things a little more hectic around here, I have managed to lose my drivers license! Being the overly prepared mommy, I always take my license, my insurance card and Alexander's insurance card with me on one of our walks. At some point during one of our walks, it some how fell out of the stroller. Since we are keeping Alexander away from germs, the last place I want to take him is the DMV. So when I tried to set up an appointment to get a new license (because of course they can't have this option online), the earliest is May 8th! Obviously that isn't going to work out. So, thanks to my wonderful mother-in-law, I will be going to the DMV on Wednesday to stand in line and wait, for who knows how long, to get a new license. BLAH! Hopefully it won't be as painful as I'm imagining it to be.

Thank you all for the words of encouragement to stay strong, for the prayers being sent our way that Alexander stays strong and rocks his upcoming procedure, and for those of you that have been checking in on me, to see how I'm doing, I THANK YOU! Please continue to pray for our Superman and I will continue to keep you updated on what's going on! <3

Not the results we wanted

As promised, the update from Alexander's cardiology appointment today. It was not the results we wanted.

The visit started off good with Alexander cooperating during his echo-cardiogram (many kids, beginning around Alex's age, get sedated for echo-cardiograms). He stayed still for most of it, while his daddy sang to him and showed him his favorite songs on a Fisher Price App (thank goodness for electronics too.).  His cardiologist came in for the results about a half an hour later, informing us that the pressure in the left atrium of his heart had gotten larger than what it was 6 weeks ago, due to tissue regrowth in his ASD (the hole in the heart wall that used to separate his left and right atriums). Therefore, it is necessary to have Alexander go into the catheterization lab soon to reopen the hole. Because of the size of the growth, his cardiologist can't just go and use a balloon to open it up, instead a metal stent may need to be implanted. However, before this can happen she must first talk with his cardiac surgeon, Dr. Starnes, and find out if the stint would cause any complications later on for his next surgery (which is still at least a year away). If so, he may need surgery to remove the growth. For now, we start with taking him to the cath lab.

Of course hearing this news brought tears to our eyes, as this the not what we wanted to hear. We were hoping the next time we had to hand our little toddler over to the surgeons would be when he was closer to 3 years of age - not at 14 months.

I'm not looking forward to handing him over to the doctors. I'm not looking forward to the waiting game, to seeing him hooked up to lines and possible vents. I'm not looking forward to seeing him on pain medication or having to keep him calm after all of it is done. I just want to keep him home and continue to teach him the world around him. I don't want to pause.

Even though I'm not looking forward to Tuesday (which will be here before we know it), I'm going to try to stay strong, get most of my crying done over the weekend and just enjoy being with my happy, lovable son! Because Alexander must be healthy in order to have the procedure , we will be quarantining ourselves this weekend. No visitors coming and we won't be going anywhere with him. Prayers and positive thoughts/energy are much needed for all of us. For Wes and I to stay strong for Alexander, for Alexander to rock this procedure and that no complications arise from any of it, and that we only have to stay 1 night in the hospital. As always, I will be updating you on how it all goes and thank you for following us along on our superman's journey that is about to get rocky again. <3

Frustrated & Jealous but completely amazed on what's he's accomplished!

I never truly understood the stress that a mom with a special needs child goes through until now. Right when I feel like Alexander is catching up and  learning so much I discover that I should also be teaching him this or that. My biggest concern is that he is not talking/babbling and I'm becoming frustrated with being told "it will happen".  If he was babbling, I'd be okay with that but we aren't there. When I look back at a video of him at 8 months old, babbling away, I think "what the heck  happened?" FRUSTRATING!!

As this is my outlet to vent, I felt like describing the feelings I have been having besides the frustration. The feeling of saddness that my son will always be fighting for his health and the feeling of jealousy when I see friends and family members have healthy babies. I felt that I may offend some of you and therefore am holding back. Don't get me wrong, I'm ecstatic for my friends and family with their new bundles of joy! It's so wonderful to see their family grow. 

I know that I shouldn't have these feelings but it is very hard at times! Alexander is thriving and in areas that I'm not Expecting- which is FANTASTIC and I'm BEYOND grateful! I know the situations could be worse.

Okay, So my semi-rant is over. As I mentioned, Alexander is doing GREAT. The last time he was weighed, he was at 17 pounds 10 ounces. We no longer weigh him, so you could say we are starting to become "normal" parents. :) We predict that Alexander is now in the 18 pound range.

In the past 2 months, Alexander has excelled more than he ever has. He's crawling for starters! Started crawling the second week of March and is now learning to pull himself up onto his knees. When placed on his feet he will stand up and he FINALLY learned to sit up from a lying down position! Needless to say, nap time has become a little more difficult! His physical therapist has now begun to teach him to pull himself up to a standing position. 

Cognitively-he's right on track! If not, higher! :) He amazes me everyday with how much my 14 month old understands. He's completing 3 piece peg puzzles, putting basic shapes into a shape sorter, identifying many objects, and imitating just about everything. 

Feeding has gotten better too! We've finally begun to feed him soft foods and not just purée. Alexander is also learning to drink from a cup. Speech isn't there, as mentioned, nor is he imitating anything with his mouth (sticking out his tongue, blowing raspberries). A few weeks ago he received an oral motor evaluation and it has been recommended to Regional Center that he receive speech therapy. Problem is, they don't provide it to kids until they are between 15-18 months because an occupational therapist works on the oral motor muscles to help get babbling started. So, I'm working on pushing for speech anyways because he's almost 15 months. Until then, we have begun teaching Alexander sign language because he's becoming frustrated when trying to communicate to us. He signs "all done", " more", "cracker", "milk", "eat", and  "book". 

Last months cardiology appointment went well. However, they did find that his ASD (hole in his heart acting as a valve) is forming scar tissue. If the scar tissue continues to form, Alexander will have to go back to the cath lab. This coming Thursday, we go back for his check-up and find out how his heart is doing. My stomach will be in knots until then. Prayers needed that all looks good on Thursday!!!

He had an orthopedic appointment last month as well (yes, busy month). The  doctor said nothing could be done with his foot now and to wait until he's walking,  in order to get a better idea of what is going on. So we go back in 6 months. His vision appointment was earlier this month too. We learned that he still far sighted and the possibility of him needing glasses is still there. We go back when he's 2 years old  to get a better idea.

Overall Alexander is doing great!! Wes and I are just watching him grow and are busy all of the time teaching him new skills and exposing him to the world around him. 

As always,  we thank you for following us along on our Superman's journey. It is AMAZING to see how far he's come and what's he's doing now. I look forward to what he's going to prove to us that he can do and pray that he continues to stay strong and healthy. Prayers and positive thoughts are always appreciated- prayers that this mommy can relax occasionally and not stress about everything. Prayers that he learns to make sounds sooner than later and lastly, prayers that all goes well on Thursday and that we won't need to visit the cath lab. I promise  to not take 2 months to update you all after our visit too. 



We hope you all had a wonderful Easter! ❤️

2013 Easter

2014 Easter