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A Nervous Mama

IMG_1265So the day is almost here.  Surgery day!  Peanut will check into the hospital at 6 am on Thursday morning to have her tonsils and adenoids removed.  I know, this is a simple procedure and its not a big deal.  Let me tell you, to a mama of a 2 year old…this is a big deal!!!  We have to hand our baby girl over to strangers and pray that they will return her to us safely.

I just finished reading this article… Anesthesia & Down Syndrome  and now my anxiety is even higher!!  My husbands response was “Stop reading these articles, pray and trust that God will take care of her!”  I know that God loves Peanut even more than I do.  I understand that He has a plan for her far bigger

than I can ever image.  I just need to stop focusing on

myself right now…and remember my job is to rely on Him.

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Please keep us in your thoughts and prayers this Thursday.  We for sure have to stay one night however the Doctor did tell us there is a possibility of a 2-3 night stay.  I will try to keep you posted.

 

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Another trip to the ER

img_7462So yesterday Juan and I drove Jana 2 hours to take her to the Rady Children’s Hospital ER.  All last week she had been sick and was already on an antibiotic.  Se had seemed to be getting better.  However, from Thanksgiving on, she seemed to be worse.  Just not feeling herself, coughing a lot and then we noticed her skin tone was off.  With her heart problems, she has always had some circulation issues.  Usually it goes right away, however she just didn’t have good color or circulation.  We decided to just take her in.  Luckily, there was nothing wrong!  The doctors felt that this is all from her upper respiratory infection.  It has been the first time we’ve made the trip for basically no reason.  Which to me, is pretty awesome!  I am planning on contacting her cardiologist to see if we can bump her apt up from February.  That’s a little tough though cause they are very busy.

Before we took off we had to stop for gas.  I laughed to myself because from the  gas station, I could see our local hospital.  We were one block away, but taking a 112 mile trip instead.  Do we have the best medical care where we live, no.  But that honestly isn’t the reason.  Jana is not a typical child.  She has other health issues that Down Syndrome has caused.  So far we haven’t had very much luck locally when she has needed emergency care.  We trust Rady’s.  They have access to all her specialist, all her testing, and a better understanding of her health concerns.

When we met with the doctor, we went through Jana’s history with her.  We explained our concerns, what we’ve been doing about them and what we thought was wrong.  She told us we seemed to really be on it and educated about her health.  Part of me felt like saying, “We have to!”  Never with the big kids did I feel like we had to fight to make sure they got the help they needed.  We basically have to know what Jana’s conditions are, what medical treatments help, and why she is having issues.  Honestly, there have been times where we feel somewhat more educated than the people who are there to help her.  But this is our job!  Our job as her parents to make sure she gets the care she needs!  We are the ones who have to petition for her therapies, apts, and services.  Our job as DS parents is to connect with other parents, to ask questions, to read and research, to allow others to help and be involved in raising Jana.

But you know what…all of it is worth it!  The arguing with providers, the traveling, stress, worries, the waiting, it is all worth it to make sure Jana is the best she can possibly be.  I would move the world for this girl!  She makes our lives not only a little more interesting, but also full of love and smiles.  She is So Totally Worth It!     jana2

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Sleep Study

We are currently in a tiny hospital room. Lights are dimmed, soft music is playing, and little peanut is asleep with about a zillion wires hooked up to her!  We are finally doing our sleep study. They need to have monitoring for at least 6 hours, meaning she can’t pull any wires off. She has to be asleep for at least 2 hours for them to get any findings, and it will take about 3 weeks for the results to get back.  There is so much pressure to get good results. This will help us see if there is any way she will sleep through the night. I am praying they find something!  Anything they can find to help figure out why she has so much trouble sleeping. 

We did get a break last night. Of course the night before her sleep study she decides to sleep 8 straight hours!  Don’t worry, we won’t get too used to it. Her sleeping through the night is kinda like finding a four leaf clover. You search and search and search, finally find one, after picking it, it withers and so your search starts all over again. Not sure if that analogy works. Remember I’m in a constant state of sleep deprivation. Bear with me. 

I do have to say, even though none of these wires are causing her pain (just a lot of discomfort) it is scary seeing her like this. The big kids never had anything like this done. But seeing your baby hooked up to so many monitors, is never easy. But it’s just another thing we have to do. Another thing that Down Syndrome brings to our lives. 

Praying we get some rest and some answers!!  Wish us luck!!

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Down’s Clinic

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Hotels are so much fun!

If you remember back when Jana was 2 months old, we had our first visit to the Down’s Center at the Children’s Hospital.  (Read about it here: 7 Specialist in 4 Hours)  Well yesterday Jana had her second visit to the clinic.  So once again, she saw 7 different specialist in about 4 hours 🙂

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In the waiting room

We started with the social worker to make sure Jana was receiving all the services she is qualified for.  We then saw a dentist.  This I was actually looking forward to!  Jana has been popping her jaw for the past 2 months.  She leans against us, either on our chest or arms and literally pops her jaw.  I always worry she is going to hurt herself but it doesn’t seem to bother her.  The dentist was surprised about this.  She said it is actually very rare 🙂  She checked Jana’s jaw and even saw her do it.  She didn’t feel that there was any concern and thinks maybe Jana is just exploring her mouth.  Since Jana is still pretty young, there isn’t much yet for her to do.  When she turns 1 year (in 3 months!!) they want us to take her in and from there they will do x-rays and check her alignment.  Until then, we just have to monitor it and try to not let her do it.

Next we saw a speech therapist.  This was actually our first time ever meeting with one.  I’ve had concerns because Jana isn’t really trying to talk yet.  She yells, growls and grunts at people, but no “Mama” or “Dada” yet.  Of course, people keep asking me “Shes not talking yet?!”  Making me feel like she is way behind.  Thankfully she isn’t!!  Even with typical children words usually don’t start till around 10-11 months.  So she is right where she needs to be!  She did inform us however, that because of the respiratory issues Jana has, there might be times where she has slight hearing loss.  If she is very congested and having build up in her nose, most likely she will develop water in her ears.  This is because unlike typical children who’s ear canals are slightly slanted, children with Down’s are straighter, therefore they cannot always drain correctly.  She recommended we speak to the pediatrician about a ENT referral.

We visited with a Physical Therapist, Occupational Specialist and a Nutritionist.  All who said Jana was doing great and to keep up with what we are working on at home 🙂

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Waiting to see the Doctor

Lastly we were able to see two Pediatricians who specialize in Special Needs children.  They both recommended Jana be seen by an Ear Nose and Throat doctor as well.  First because of the infections she has been getting, and secondly to start monitoring her.  As she gets older, she has a higher need for surgery or special care.  We see them on April 15th.  Lastly, they put in orders for blood work.  They want to monitor her Thyroid and check for anemia.  Children with Down’s are often more prone to anemia and are also at a higher risk for leukemia.  When Jana had blood work done back in August, her thyroid numbers were slightly low.  Not low enough for any concern, they just want to monitor it and make sure they are still in average range.

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The paper was a hit!

This coming Friday we head back up to Rady’s to see the Cardiologist.  This is to go over her testing she’s had done in the past and to make sure her heart murmur is closing.  We also need to speak to him about her blood circulation.  We’ve noticed at times her legs turn slightly discolored and she gets what they call marbling.  This usually happens when shes sleeping or being held in one spot for a while.  The pediatrician didn’t seem to be concerned about it.  He said some kids do have a circulation issue, however it is nothing that needs to be seriously addressed.  We are hoping the cardiologist will help put us at ease as well.

Jana definitely has a busy schedule!  Next week she will redo the Baer Test and her vision will be checked the beginning of June.  Lots of doctor visits…lots of questions answered.  Praying all these test come back clear and she is healthy as can be!

 

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Fear of the Unknown

ryderThis weekend I had the opportunity to participate in an online auction for a sweet little boy with Down Syndrome named Ryder.  His mother noticed in photos that one of his eyes always looked like it was glowing.  She felt uneasy about it and mentioned it to her pediatrician at Ryder’s 4 month check up and within 36 hours they found out that he had a cancerous tumor in his eye.  He now has to travel with his mama to New York every few weeks to complete his cancer treatment.  My heart ached for this poor mom.  Here she has to watch her baby boy go through treatments, pain and discomfort and he has no idea why.  I’ve been praying for this family and I hope you can add them to your thoughts as well.

After hearing about Ryder, I did more research about the cancer.  Children with Down Syndrome have a much grater risk of being diagnosed with Leukemia and other cancers than typical children.  Because so little is known about what causes Down’s and why so much of the children’s body is affected by it, it is unknown why they are at higher risk.  I have read however that Down Syndrome patience often react much better to medication and treatments than other children.  Again, something else they are unsure why exactly.  So even though little Ryder has a very rare form of cancer, there are many other children with Down’s who are facing the same fears.

How blessed with have been to have Jana so healthy and safe!!  There are so many things against my little girl and I am so grateful every day that she healthy and strong.  Yes, she is slightly behind developmentally right now (Only sitting up and being on all 4’s with support) and I know we will not see her delay fully until she reaches grammar school, but she is fighting along.  It could be so much worse!  But because of that, it has helped me appreciate and rejoice in her little milestones.  There are so many things that can come up in her life that will be a struggle.  That is why so many people have asked us why we choice to take on such a “burden.”  First of all, she is a beautiful little girl and never should be looked at as a burden.  And second, she is amazing and doesn’t ever deserve to face these obstacles alone.  God brought her to us for a reason and we will cherish all the times we have with her…the good AND bad!

If you would like to read a little more on baby Ryder or help contribute to their family check this out:  Ryder’s Retinoblastoma Battle #PrayForRyder

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Adoption Update!

blogger-image-984289996.jpgI realized today I never notified all of you that Jana went home!  She was released from the hospital on Friday afternoon.  She made a complete turn around and is perfectly healthy now!  They were able to take her off the oxygen on Thursday night, by Friday at noon the doctor said she was good to go!!  We were so excited to take her home.  It was a LONG week but we loved everyone who cared for her at Rady’s.  They are all amazing doctors and nurses and we are very grateful for their care of Jana.  Since being home she has been overly happy and affectionate and constantly rolling around 🙂  Just making up for the lost time!!

On an even happier note, yesterday afternoon Juan and I signed the paperwork officially removing Jana from Foster Care and putting her into a perspective adoptive home.  This means on Thursday, January 28, 2016, Jana will finally be a Benito!!  I cannot explain how excited we were to sign those documents.  It has taken a lot of time an patience to get here but we are now almost done!  I was literally jumping around and dancing with her after our social worker left.  (Figured I should wait for her to leave before acting all crazy lol )  Jana has been ours from the moment we found out about her.  This just makes it official!

Technically we can now post photos of her…but Juan really wants to wait for her adoption date to arrive to make it extra special 🙂  Just two more weeks!!

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My nightmare

 *Writers warning:  I apologize in advance for misspelling or bad grammar. I’m going on very little sleep and a whole lot of stress!!* 

Yesterday I had a doctors apt in San Deigo. We almost didn’t bring Jana but she woke up seeming great. No fever, little coughing…we were happy 😊. During my apt we noticed her breathing seemed a little odd…by the time we got her in the car she seemed to have a fever. We talked it over and figured Children’s was right here. She wasn’t getting any better and they had already seen her for all her specialist. 

When they got her in her tempature was 104 degrees. She was struggling to breath through the coughing and slightly dehydrated. After x-rays, they noticed she had the beginning stages of phenomena. She needed to be admitted at least overnight. 

She needed an IV. I knew it would sucks…but I wasn’t prepared for this. Due to her dehydration it made it close to impossible for them to do it. After 4 tries…Yes 4 times of them poking her…her screaming at the top of her lungs…they got it. It probably killed the nurses as much as it did us to hear her. They were so upset they had to do that. I knew she absolutely needed it.   But how do you explain that to a 7 month old??

That was bad…but not the worst thing. Her nose is so congested they had to suction her nose out with a machine.  They do it twice. Once just a frontal nose suction. Almost like using a NoseFrida. The second part is actually sticking a small tube down each nostril and her throat. I am telling you, I’ve never heard any of my kids cry like that!  It was so heartbreaking to hear. It helped so much…but so hard to watch. They’ve done that twice now. 

She was up last night till around 2:30 screaming. We couldn’t do anything to calm her down. As soon as she would start to drift off she would struggle to breath and scream again. It was torture. I couldn’t snuggle with her because she couldn’t breath right. She could roll like she normally does because of the IV on her arm. She couldn’t really suck anything so that meant no bottle, no binkie, no hands.  Finally the nurse wrapped her up super tight and caused her to stop fighting. She struggled for another 30 min then crashed. She’s woken up about 4 times since then. But almost immediately fell back asleep. 

She’s struggling.  Juan is struggling. I’m barely holding on. This has been the hardest thing I’ve faced. Being with Jaylen during her  Anaphylaxic shock, her appendectomy…stitches for both boys. Nothing has compared to watching our tiny baby scream and freak out.  I would do anything to remove this from her. To switch places, to have her back to her beautiful happy self. 

Doctors are thinking it will be another night or two. She needs to be able to be off oxygen, not needing her nose suctioned and eating regularly for 8-12 hours. When all three are cleared we are home.  

I know I’ve asked you to pray for our family in the past…but now we desperately need it. Please pray that Jana keeps fighting this and gets better. That the doctors and nurses that are caring for her are doing everything they need. Pray for Juan and I as we get very little sleep and have to watch this all helplessly. We want our Jana back and healthy. I can’t wait to hear her adorable belly laughs and watch her attempt to crawl. To snuggle her in my arms as she slowly drifts to sleep.