3rd WDSD!

My last blogpost was well over a year ago… clearly I will never be cut out to be a lifetime blogger. 

Here I am. My 3^rd World Down Syndrome Day. I can’t believe it. A lot has gone on in the past year. The biggest thing is that Reese is still seizure free. PRAISE JESUS. There is still a little fear in the back of my mind that some day we will see those again, hope that doesn’t happen.

Reese is about to start walking completely independently on her own, she is about up to 20 steps by herself. She is pretty confident, but her legs are just little sticks. She loves to pull her sister’s hair and do everything her sister doesn’t like… that’s what sisters are for, right? I don’t know! (I don’t have sisters.)

What I am here to say, amidst all of our quarantine we are still here to celebrate. Celebrate those who are different than us. Why do we “ROCK OUR SOCKS?” We rock our socks, because socks represent chromosomes. Everyone has different socks, but they all do the same thing like keep out feet warm. Socks represent chromosomes. All of our chromosomes are different, but they make up who we are. Some socks are black, short, silly, fat, white, tall, and completely different than the person next to us. We all have different socks, and some might have an extra stitch... just like Reese’s!

Reese’s socks show that she is speaking and signing up to 30 words. Taking up to 16 steps on her own. She and get off the bed and couch without going face first. Also, she is actually enjoying her first quarantine. Here we will be for World Down Syndrome Day, enjoying our day at home (thanks to Covid-19.)

New diagnosis....

In regards to my post a few weeks ago about Reese’s seizures, we have some further updates...

On Monday the 3rd, I was in contact with the Down syndrome clinic in KC, as we had an appointment on Wednesday. I wanted to see their neurologist for a second opinion, or to even review her previous EEG’s. The scheduler there recommended me to contact the Neurology office at Children’s Mercy and see if I could talk to a nurse. So, I did. When I talked to the nurse and gave her my concerns of Reese, explaining that she has started to regress in her fine motor skills, and her seizures were happening more in clusters, she recommended me to come into the ER and just be admitted instead of waiting for a new patient appointment (which could be 2+ months). I said, “ok, after our appointment on Wednesday (that we have been anxiously waiting for) we would come into the ER, and me admitted for further testing.” She replied, “no, I mean like today… or now.” Que panic attack.

Taylor and I arrive to KC about 8:45 Monday night. The nurse I had spoken to that morning already started a file for Reese and noted a brief description of what I had told her. We were admitted in no time flat. The on call doctor came in that night and I told her every little piece of information about Reese, from her C-PAP when she was born, to the barium enema done a month ago, all the way to every detail of her seizure activity. I had her medical records from her birth, NICU stay, recent hospital visit, both EEG’s and her MRI. I wasn’t about to let this case slip though anyone’s fingers.

The next morning at 7 am Reese started her EEG. This went on for over 8 HOURS! (Her previous EEG’s were 20 & 30 minutes) At about 11 am the Neurologist and her team of what seemed like 27 people crowded into the room. Que panic attack. Reese has infantile spasms with modified hypsarrythmia. I’m not going to say I knew it all along, BUT I KNEW IT ALL ALONG. My gut instinct never told me that I was confident she didn’t have it, even though I was told otherwise. She was showing every single sign and symptom. The treatment for infantile spasm is very aggressive. As of now, Reese will be getting ACTH injections twice a day for two weeks, and then we will wean down from there. Since this steroid injection is so aggressive we had to cover all our bases first. On Tuesday Reese was overwhelmed with tests. She had metabolic studies (blood and urine), another echocardiogram to measure the muscle around her heart as the steroid can cause that to thicken, and also to make sure her heart is healthy enough since she still currently has the ASD and PFO.  Reese also had a chest x-ray to make sure there was no infection in her lungs as the steroid will weaken her immune system, and can cause an infection to get dangerously worse. The worst test of them all was a lumbar puncture. Most likely the infantile spasms are because she has Down syndrome; however the neurologist didn’t want to assume anything. Can I tell you how thankful I am that they want to cover everything before we start this aggressive steroid!?

Yesterday was hard, but every day is a new day. Today we will wait to see how all of her tests went then we will hopefully start the steroid injections. As much as I didn’t want Reese to have infantile spasms, I’m so thankful that we got a diagnosis before it got worse, and before she started to regress on her gross motor skills. I’m ready to kick these seizures to the curb, and to get my spunky baby back! The next month will be tough as the steroid does have quite a few side effects. If you all could please keep us in your prayers, we would greatly appreciate it.

                        

Love to all.

Down Syndrome Awareness Month!!

October is Down syndrome awareness month!! This gives us a chance to spread awareness by celebrating with those who have Down syndrome and to also make others aware of their abilities and how amazing they are! Many people are scared to talk about Down syndrome because they simply don’t know what to say. Don’t worry, I was there. A year ago if you would have told me I would be the one celebrating, I wouldn’t believe you! If you ever have questions, ASK. Don’t be afraid to talk about it, and most importantly don’t be apologetic to a parent that has a child with Down syndrome. Educate yourselves and others.

31 facts about Down syndromes, for the 31 days of the month.

1.       Down syndrome is an extra copy of the 21^st chromosome. A typical person has 46 (23 pairs), one with Down syndrome has 47!

2.       There are 3 different kinds of Down syndrome. Mosaicism, Translocation, and Trisomy 21.

3.       Babies with Down syndrome have low muscle tone (hypotonia) which is why it takes them longer to roll over, sit, walk, talk, and eat. One can’t get rid of hypotonia.

4.       Today, the average life expectancy of someone with Down syndrome is 60!

5.       Those with Down syndrome aren’t always happy. They experience feelings just like everyone else.

6.       The average height for girls is 4’9”, and for boys is 5’2”.

7.       Down syndrome occurs to people of all races.

8.       Approximately 1 in 700 babies are born with Down syndrome.

9.       At least 50% of those born with Down syndrome have a heart defect.

10.   National Down syndrome day is March 21^st. 3-21 for the 3 copies of the 21^st chromosome.

11.   You either have Down syndrome, or you don’t. Each individual is unique and thrive in their own ways. There are not different “levels” of Down syndrome.

12.   Down syndrome is the most common chromosomal condition.

13.   Physical traits of Down syndrome are almond eyes, sandal toe, short neck, flattened facial profile, simian crease in the hand, to name a few.

14.   People with Down syndrome have an increase risk in certain medical conditions such as Alzheimer’s, childhood leukemia, and thyroid conditions.

15.   Many adults with Down syndrome have jobs, go to college, and get married.

16.   It is Down syndrome, not Downs. People have Down syndrome.  “Reese has Down syndrome”, not “Reese is Downs.” It does not define an individual; it is a part of who they are.

17.   Even though kids with Down syndrome have similar features, they resemble their own family members more than they resemble each other.

18.   People don’t “suffer” from Down syndrome. Most of them are very happy with their lives.

19.   9 out of 10 prenatal diagnoses of Down syndrome, end in abortion.

20.   Those with Down syndrome still have hopes and dreams.

21.   The R word is very offensive. Those with Down syndrome deserve respect. If you are using it in regards to something else, there are better words to use.

22.   50 years ago, many people with Down syndrome were sent to medical institutes. Now parents work hard and fight battles and advocate for their children.

23.   Down syndrome is a beautiful thing!

24.   Dr. John Langdon Down discovered Down syndromes.

25.   Over 400,000 people currently have Down syndrome in the U.S.

26.   Characteristics of Down syndrome aren’t the same for every person.

27.   Translocation is the only type of Down syndrome that can be hereditary.

28.   Down syndrome is not an illness or disease.

29.   Children with Down syndrome go through the same stages of development, it just may take longer.

30.   One’s physical features don’t determine their cognitive ability. Just because they may not have strong facial features, doesn’t mean their cognitive ability is higher, or vice versa.

31.   People born with Down syndrome are a blessing. If someone tells you they are pregnant with a child that has Down syndrome, reply with “Congratulations!”

If anyone ever has questions about Down syndrome, or wants to know a little something extra about Reese, or anything about Down syndrome, feel free to ask. Also, we will be celebrating this month by attending the Buddy Walk, held by the Down Syndrome Society of Wichita. If you are wanting to join us that would be awesome. If not, we are thankful for any donation possible. We are so close to reaching our goal, and we couldn’t have done it without you all!

You can click the link to sign up to walk, or to donate.

Rockin' and Rollin' with Reese

PS - I had to go through Reese's medical records and found her results from her genetic test, and I find it pretty cool that you can actually see the 3 copies of the 21st chromosome. 

SISTERS!

As most of you know, I don’t have any sisters. I have two older brothers, and we are all within three years of each other. Bless my mother. Growing up I always wondered what it would be like with sisters… would they steal my clothes? Would my mom still take me shopping? Who knows? When I figured out I was pregnant with another girl, I was so excited! LEIGHTON WAS GOING TO HAVE A SISTER! I was excited to dress them the same, make their Halloween costumes match, watch them grow up together, and enjoy the times of Reese driving Leighton crazy! When Reese was born, it all changed. Yes, I can still dress them the same, Halloween costumes will be the same, but what will the future be like? I’ve never had a sister, but I can only imagine calling each other every day, giving advice on how to get your kids to sleep through the night (who am I kidding), wedding planning together, sending each other crockpot recipes, and so much more! When Reese was first born, the thing I was most upset about was that she might not ever get married, and will probably never have kids.Come to realize, that’s not what life is about. Think about it, if you are a mother, what do you want from your kids? HAPPINESS! We can plan our kids’ lives, and have all these hopes and dreams all planned out for them, but we’re not the ones who make their decisions. All I want from my kids are HAPPINESS and I am 100% confident, that Reese will show me nothing but happiness!

Pictures below to show that Leighton loves her little sister more than anything!

Don't worry, be happy 💓

 

Six Months Old

It’s amazing how many times you hear, “they grow up so fast.” It really is true, especially after the first child.

Reese is now 6 months old… WHAT? We have had a very busy last few days. This week consisted of all of Reese’s 6 month check-ups.  On Monday the 25^th, we went to the ophthalmologist to verify that Reese can see and that she won’t need glasses in the near future. She passed with flying colors, and was a champ the whole time. She got her eyes dilated, and just smiled at the doctor the whole time. He said not to come back until she’s 2!!!

 On Tuesday the 26^th, Reese had therapy with Rainbows, and they have an audiologist on their team. The audiologist came out to our house and checked her hearing, and made sure there was no fluid behind her eardrums. Reese slept through the whole thing (shocker) and passed with flying colors again! Little ones with Down syndrome have very small ear and nose canals. This being said, it is very common to get ear infections, sinus infections, fluid behind the eardrums, and even clogged tear ducts. Testing the ears every 6 months is very important, so we will see them again in December!

Wednesday, the 27^th was the biggest one… The cardiologist… dun dun dun! Reese has a PFO (patent foramen ovale) and an ASD (atrial septal defect). When we got there, we got checked in, talked to the doctor, and did the echocardiogram. Reese did so wonderful. They swaddled her little arms in and she chewed on her pacifier for the whole 50 minutes, while watching Despicable Me. Then we talked to the doctor afterwards for the verdict. I was hoping to go in there and they say that everything has closed up and we can check on it when she’s 2. Unfortunately, that was not the case. She still has the 2 holes in her heart, but her pulmonary hypertension is gone. The holes are the same size (moderate), but her heart is getting bigger. YAY! The ASD has caused the right side of the heart to be a little bigger than the left, but that is fairly common with the situation. We will follow up again in 9 months and pray that it gets smaller. As of now, no surgery, but unfortunately not out of the woods yet! We will get there…  Taylor is always looking at the bright side of things so we got 2.5 out of 3 for her appointments, so thankful for him!

Reese has been trucking along with her therapy! She is rolling over from her back to her tummy, but then gets stuck. Hasn’t quite mastered the rolling over from belly to back yet, but I have no doubt it is coming soon. She can hold her head up, is loving time in her high chair, and her frequent stroller rides! Also, she gives the best smiles J

Advocate like a Mother!

Who knew at the age of 23, I would have a child with Down syndrome... not me! On December 29th, 2017, after being in labor for only 4 days, I did. 

I begged the nurse at the birth care center to admit me after being in labor for four extremely long days. Thank goodness she finally did. Once I got my epidural, I was ready for a nap. However, 30 minutes later I was dilated to a 10 and ready to go. No nap for me! Reese was born in about 6 minutes. She let out a big cry, then it was silent from there. I could tell her color was a little off , but all I could see were the stars in her eyes. The nurses laid her on my chest for a couple minutes, and then took her for some testing in the little bed next to me. I could hear them talking, and Taylor and I just kept trying to look over and see her. They put Reese back on my chest with the tiniest oxygen mask I have seen, and it was still too big. The OB that delivered Reese (not my original OB) came over to make a statement that would change our lives forever. She asked if we had done any previous genetic testing, we said no as we never felt the need. She responded, "Well, Reese is showing some physical traits of Down syndrome, but I do believe everything will be alright." ......... Taylor said, "uhh, what?" From that point on things were a blur. One of the NICU nurses came over to Taylor and I, and started to point out the characteristics. All while I am still trying to hold this tiny mask on my freshly newborn baby! She pointed out her low muscle tone (hypotomia), sandal toe, almond eyes, fatty roll on her neck, brushfield spots (stars in her eyes), and simian creases on her hands. Shortly after that they took her to the NICU for further testing, and to get her O2 levels up. Taylor went with her, and I watched my newborn baby, that I just carried for the past 10 months being wheeled away in an incubator attached to monitors and oxygen wearing the tiny hat with her name on it. I lay in that hospital bed for another 2.5 hours waiting to see my daughter. I was numb. I was nervous, scared, sad, mad, and secretly hoping the nurse was wrong. This isn't what I asked for. I prayed for a happy, healthy, and sleepy baby. -- That's exactly what I got!

Taylor held my hand and led me to our baby girl. She was laying there in her little bed, connected to monitors. Such a bitter sweet feeling. She looked so peaceful, but all I wanted to do was pick her up and hold her. So, I did! What an amazing feeling. After Taylor and I passing her back and forth for the next 11 hours, it was finally time for us to go to bed. The feelings all came back again.  I was numb. I was nervous, scared, sad, mad, and secretly hoping the nurse was wrong. I wasn't supposed to be leaving her there. 

The next few days Reese passed her hearing test, was clear of cataracts, took her first bottle, had an echocardiogram, confirmed she has a PFO (patent foramen ovale), hypertension, and a diagnosis of Trisomy 21. 

After 4 days in the NICU of tests, tests, medicine, diaper changes, IV's gone wrong, and a few more tests we finally made it home. Reese had a big sister waiting at home for her the whole time. No children under the age of 12 were able to come up to the hospital since it was right in the thick of flu season. Big sister, Leighton, was so excited to meet Reese. Her reaction was priceless. Since then, Leighton has been Reese's second mother!

Taylor and I have had so much support since day one. The geneticist from the hospital was very informational, and explained everything to us in detail. When we got home, friends and family delivered food for weeks. The Down Syndrome Society of Wichita brought the sweetest basket with great books, information, an adorable outfit, and of course a blanket. Reese has also started early intervention through Rainbows United, and sees a therapist weekly. Since we are coming up on 6 months soon we do have a few follow up appointments to get her eyes, ears, and most importantly her heart checked again. We are praying every day that her PFO is closed, and the hole is gone!

I never thought that I would be living this life, but here I am Advocat(ing) like a Mother!

I planned to have this blog to keep others updated with Reese and this beautiful life that God has given us, but also for my own sanity. Writing (or typing) is something I enjoy, especially about someone I love. I'm sure I will get sidetracked and post about other things in my family, but we're all in this together. 

I'm going to add some facts about Down syndrome that others may not know:

1. There are 3 different kinds of Down syndrome -- translocation (4%), mosaicism (1%), and trisomy 21 (95%). Reese has trisomy 21. 
2. The average person has 46 chromosomes (23 pairs) - with Trisomy 21, this means there are 3 copies of the 21st chromosome. 
3. Roughly 60% of people born with Down syndrome have heart defects.
4. It is the most common chromosomal condition. 
5. In 1983 the life expectancy for a child with Down syndrome was 25, it is now 60.

DownRightReesey