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

Alexander's Birthday Party

Well, it's official. Alexander is now 1!

His 1 year check up and birthday party all went well. Alexander weighed 16 pounds, 11 ounces and is 27 inches long at his appointment. He did great at his birthday party too! No tantrums, no crying while be sung too; just smiles and took it all in! His Dr. Seuss birthday theme was a hit ! From the photo booth to the bulletin board of monthly pictures and food placement cards! Alexander got lots of fun toys that made our house look like Christmas all over again!  Here's a little preview of the party:

Alexander's talented cousin designed the invitations! :)

Next week he has an orthopedic appointment, a cardiology appointment, and appointment with his Electrophysiologist (pacemaker doctor). We once again pray that all looks good with his heart from the echo cardiogram, the chest x-ray shows no fluid, that his pacemaker is working  wonderfully, and that no surgery will be needed on his foot. For those of you who don't know or forgot (as this has been one of the least important issues), Alexander was born with what we call a "funny foot". His left foot doesn't have the arch on the side of his foot, therefore resembling his right foot. 6 months ago his orthopedic said that there was nothing to be done now and hopefully applying weight to his foot would help fix it. We are hoping that this is the case or worst case scenario: him having to wear a special shoe. The last thing I want to deal with is another surgery. I will try to update the blog after his appointments and with news that he's crawling (he is so CLOSE!). 

We appreciate positive thoughts and prayers for next week and thank you again for following us along on our Superman's journey. 

Happy 1st Birthday to our Superman!

Here is the long and over-due post:

There is no excuse for not keep everyone updated except that time has escaped me!  I got behind because I have been busy attempting to catch Alexander up on his milestones, keep myself healthy and sanity, as well as expose Alexander to what is around in his environment! I've come to realize that having a boy with half a heart, I must take one day at a time and cherish each day because we don't know what will happen tomorrow. 

Now, on to the GREAT news. Alexander is 1!! I can't believe it has been a year since the emotional roller coaster began!  A year ago, I was finishing up my school assignment, then went to go for my blood work for the following days scheduled c-section, made dinner reservations at a very nice and expensive dinner (as it was our last night as just a couple) when that night, our lives changed forever! It was the start of our heart journey with our Superman! This past year has been an emotional roller coaster no parent can ever prepare themselves for, but we got through it and our little one stayed a strong fighter! Stronger than his mom at times!

2014 didn't start out all that great as I got sick with the flu and pneumonia. Luckily, Wes and Alexander's grandmas took over. I'm so grateful for them! I did everything I could in order for Alexander to not get sick, including leaving him with my mom for a few days. He managed to still get sick, but luckily it was only a cough. A cough that lasted for 2 weeks and was horrible for him! He couldn't clear his throat when he coughed so he struggled with eating and breathing. Luckily, breathing treatments and some antibiotics helped clear it all up.

The end of 2013 went well for Alexander. He got to see Santa (luckily enough we went early and no one was there but us!) and we took him to the Santa Barbara zoo. He didn't seem interested but did notice the lion roaring and walking toward us. He has learned to reach for his toys while sitting up and if he still can't reach them, he leans even further to an almost crawling position to get them. Is he crawling you ask? Nope. But we are getting closer every day. Closer to scooting and closer to learning to sit up from a lying down position too!

He is still receiving Early Intervention Therapy (EI), Physical therapy (PT), and Occupational Therapy (OT). EI is working on his cognitive skills (which are great) and his speech (not so great). Alexander isn't babbling which makes this mom worry. I just keep working with him, in hopes to hear other sounds than "mmmm". His PT continues to work on using his gross motor muscles (e.g. learning to crawl), and his OT is working on eating. When we first started OT, Alexander had an aversion to having his face touched or having the spoon in his mouth. He would gag almost all of the time. He is now on stage 2 of solid foods (thick purees) and only gags if the food is to thick or crunchy. Overall, there has been a lot of progress that has been made. I have a video of some of his newly acquired skills that I will try to post later.

Alexander currently weighs 16 pounds, 10 ounces. He seems to have slowed down on gaining weight but this is due to him being more active and not eating as much.  However, over the past week, his intake of ounces has gotten better, so we hope to see some good weight gain at this next Pediatrician appointment (2/19).  Alexander has 3 teeth on the bottom now and 4 teeth cutting through on the top! Fun times with teething here!!

Since i'm on the topic of eating, I have to mention that  Alexander PASSED his swallow study in December!! No more thickening the breast milk!
However, because we had been doing this for 6 months, he doesn't like the feeling of it thin AND the OT that assessed him said we still must be careful with feeding him. She states this because during the study, she observed 30 swallows, with 3 of them showing an attempt to go the wrong way but didn't. So, we are still using rice cereal to thicken but not as much. Before we had to use 1 1/2 teaspoon to 2 ounces, now we are using 1 teaspoon to 2 ounces and will slowly fade from that. I am still exclusively pumping and looking forward to the day that we can introduce cows milk! :) 

We hope everyone had a wonderful holiday and that 2014 has started out great for you! Thank you for following us on our journey, can't believe it has been a year! Alexander has several doctors appointments next month (cardiology, pacemaker visit, orthopedic, and optometrist) and we hope all goes well with each appointment. 

We greatly appreciate the prayers and positive thoughts and we hope 2014 consists of less hospital stays and a lot more memories of our growing Superman!

Happy birthday Alexander!

We are so thankful for our little Superman!

Wow.   Where has the time gone! I realize it has been quite some time since I last updated the blog and trust me when I say that I had been working on it over the past month, but just never got a chance to post it. Here goes a summary of the past month:


Alexander currently weighs 15 pounds 5 ounces. He's tiny still but mighty!! At his 9 month check up he fell into the 3 percentile for his weight BUT his head is at 89 percentile!! Such a big brain! :) We knew before he was born that gaining weight was going to be an issue because his heart is working so much harder, resulting in burning more calories. We continue to feed him every 3-4 hours with breast milk mixed with rice cereal and solids 2-3 times a day.We believe he is dealing with silent reflux, so he is back to taking Zantac. Reflux is common among heart babies and I'm hoping he will outgrow it. Next month Alexander goes in for another swallow study. I'm REALLY praying that he passes this time by showing no signs of aspiration! I'm really tired of having  thicken his milk. If he passes, we can then start to give him water and juice in his sippy cup.

When Alexander turned 9 months at the beginning of this month, he mastered  sitting unassisted and had 2 teeth came in!! Last month Alexander learned to roll from stomach to back!! We have a rollie pollie on our hands! On the same day that he decided to be Mr. Achiever and learned to roll, he also got his first fever :( 102.6! Luckily it was quickly reduced and was a side effect from his flu shot, polio combo vaccination.

A month ago, Wes and I finally got to experience what it is like to sleep 7-8 hours straight! Our cardiologist visit in October stated that we could decrease his sildenifil from every 6 to every 8 hours which meant no more 2:00 am medicine or feeding! Alexander gets his last bottle and medicine at 9 pm and then not again until 5 am! During the visit last month, Alexander's echo cardiogram looked great and his chest X-ray just looked okay. Just last week we had another visit to his cardiologist and once again everything looked great! So good, that we don't go back until January! An echocardiogram wasn't done this time around but a chest x-ray was and still looked the same. So his medication (Lasik and Sildenfil stay as is). Still, we are happy with the improvements he has made and the sleep that we all get!

In October, Alexander got to go to the pumpkin patch and Trick or Treating! We can't wait for next year! :) Team Baby Alleman Superman Heart also joined the American Heart Association walk in Santa Clarita last month. We had a nice turn out. Alexander slept the entire walk but a had a fun time meeting Wonder Woman before his nap! 

Given everything that has happened over the past 9 months, we are so thankful for a thriving son, and the huge support we have from our family and friends! We wish you all a very happy Thanksgiving!

Join our team or please help our team

Please donate or join us on October 26th to walk in honor of our Superman and help raise money for more research on pediatric heart defects, strokes, heart attacks, and how to prevent heart disease, 

http://heartwalkla.kintera.org/faf/search/searchTeamPart.asp?ievent=1042048&lis=0&kntae1042048=EC87109422A14E4B9D9E55D80A92582D&supId=0&team=5623854&cj=Y

The love for our Superman

People ask "how do you do it?" And I always say "one day at a time" but I think Wesley's view is better: "We just do it. We have to."

There has been multiple times where I find myself crying (and I don't doubt this will stop) because I'm reminded that Alex has a life threatening condition and then I see how delayed he is when I see our friend's babies of the same age. But then I forget about it all when those beautiful brown eyes look up at me and into my eyes, with the look of love. Everyday I fall more in love  with our superman and absolutely love seeing him grow. A year ago this month, we found out about Alexander's heart defect during my 20 week anatomy scan. That day, October 1st, really changed our lives. We were stunned and unsure of what to think or how to take it all in. I remember thinking "hypo plastic what?" Our perinatologists provided us with choices, pushing abortion. But after an emotional week of taking it all in, we decided to give our baby a chance. On October 13th, we learned that our baby was going to be a BOY. From that point on I knew he was going to be a strong heart warrior. I didn't realize how much I could love him or how his smile makes me forget about what might be bothering me at the moment.

Alexander finally weighs 14 pounds!! He has been going through some changes that we are unsure of but over all he is a happy baby! On October 11th, Alexander turned 8 months old and on that day we introduced avocados, which he seems to enjoy. We are still waiting for him to get an Occupational Therapy assessment to assess his feeding and oral motor skills. I am hoping this week we get a call.

If you're wondering what is different about our little superman you're not alone.. On October 2, Alexander graduated from his Doc Band! No more helmet!  The staff didn't expect him to grow this fast and we are so happy to see him without it! Alexander has been doing very well during his physical therapy sessions, getting stronger every week. He is very close to sitting unassisted and to rolling over from his stomach to his back!

Thursday is my day of worry.  I ALWAYS worry when it is time to go to CHLA for a check up and tomorrow is the day. Alexander will be getting an echo cardiogram and chest x-ray done prior to meeting with his cardiologist. I'm PRAYING that his echo looks good (if it doesn't he would need some sort of intervention) and that his chest x-ray is clear (if it is, that means his diuretic is working and/or Alexander isn't aspirating). Please pray that tomorrows visit goes well!

We are looking forward to the new milestones our superman learns and enjoy seeing him smile when he's learned or been exposed to something new. This weekend we will be taking him to the pumpkin patch. A first of many events this year. Thank you for continuing to follow us as we watch our Superman learn, grow, and continue to stay strong.  Positive thoughts and prayers are encouraged, especially for tomorrow!