Another Payton Update

Payton is doing really well drinking out of a straw. We were told to only let her drink using a straw (versus a sippy cup) to help her with oral motor. A couple weeks ago, she got some water up here and there, but mainly just gummed the straw. These days, she is finally getting the hang of it and gets water up the straw every time. She also keeps her tongue tucked in when she sucks, which sounds silly, but it shows great muscle strength in her mouth/tongue. YAY sweet girl!

We also saw the ENT today as a follow up to surgery. Everything looked good. They did a post-surgery hearing test and well, let's just say Payton did not necessarily cooperate. LOL. They were able to detect that she could hear a little softer sounds than she could prior to surgery, but mostly she just wanted to talk, and not listen. LOL

Payton's First Tooth

I noticed this morning that Payton has a tooth breaking through...finally! It only took us almost 11 months to get one! It is her front, lower left tooth...I'm so excited she will finally have something to chew with! :)

Ear Tubes for Payton

Payton got ear tubes today. She did well and recovered faster than her brother did when he had his tubes. The doctor had to put micro tubes in since her ear canals are so tiny. He also said that all the "fluid" in her ears so thick that it was like molasses. So we are excited for her to be hearing and hoping this will help her speech take off!

Payton Update

Payton is really doing so well. We are so proud of her and her accomplishments. She is so funny...she has been putting her hands together for awhile now, but she has now started really clapping. She does it constantly...I think she enjoys the sound it makes. LOL

I also wanted to note that she has been using the pincer grasp for a couple months now. She really does great with it...she loves picking up her Gerber puffs and putting them into her mouth. We are really glad she has the pincer grasp down, as we didn't expect her to accomplish that until much later.

YAY SWEET GIRL...KEEP ON AMAZING US!!!

{Another} Payton Update

We had appointments with the GI and ENT today. She weighed 18 pounds 9 ounces, which was a little less than she has weighed in the past. I'm hoping it was just a difference in scales. Her length is 27 1/2 inches long.

The GI told us we could quit giving Payton the Zantac before bed as long as she continues to sleep soundly and does okay without it. So, we now will just give her Prevacid in the morning. We follow up with the GI after Payton's first birthday to see if we can try to ween her from the Prevacid. Reflux is such an ugly thing!

We went to the ENT as a followup to an ear infection. The infection is gone, but both ears still have fluid. So...next Thursday Payton will be getting tubes in her ears to help drain the fluid out of her tiny ear canals. Hopefully that will lead to a healthy winter season. They also did a pre-op hearing test on her, which showed mild to moderate "hearing loss", which really just meant that there was fluid and she is basically hearing under water. So, we are hoping that her speech takes off after getting the tubes. She babbles all the sounds that she should be, but consistently she really only says dadadadadadadada. What about mama?!?! :)

We also had PT today and the therapist was blown away by Payton. It had been longer than normal since she had seen her due to scheduling conflicts and Payton has really blossomed since then. She is now getting up on hands and knees and crawling more than an army crawl. She basically gets up, leaps forward and then starts the process all over again. She also showed her PT that she can cruise furniture...her PT about fell over when she did that! She is doing excellent in the gross motor area...we are so proud of her!! As far as fine motor goes, she is doing good with that too. She has had the pincer grasp down for a couple months now and is self-feeding. She still gags a bit on table foods or lumpy consistency, but we are working on that.

Here is a video of her crawling...

Payton is sick

Payton started running a fever yesterday, so I took her to the ENT today because I suspected she had either a sinus infection or an ear infection, or both. Well, I was right...double ear infection and a sinus infection. Good grief, the poor child! So we are on antibiotics again and we have to return to the ENT in 3 weeks to check for fluid. If the fluid remains, then the ENT said we will discuss getting tubes for her, as there is no sense in having her suffer through the winter.

Our first Buddy Walk!

We had our very first Buddy Walk today! We had such a great day. Our team...Payton's Posse...raised almost $3,500! We are so blessed to be supported by such wonderful friends and family! Thanks to everyone who donated and walked with us!

Payton is 9 months old

Payton had her 9-month checkup today with the pediatrician. She weighed in at 19 lbs. 3 oz. and measured 27 inches long. Her weight was a little less than last time, but the doc wasn't too concerned since it could have just been due to the difference between scales.

Developmentally, Payton is doing okay. She has been sitting like a champ for months now. She is not crawling on all fours yet, but she definately is scooting a bit on her belly (i.e. army crawling). We are working hard with her to get her on all fours and hopefully she will figure out soon that those legs can get her places! And she is clapping!

She is eating mostly 2's food, but can deal with 3's as long as it isn't too chunky, otherwise she gags a bit. We will slowly be introducing her to table food and see how she manages. A month or so ago, we also started her on a straw and she was able to slurp the water right up that straw, so that is awesome for her!

Swallow Study

Today Payton had a barium swallow study done to see if she is aspirating food/fluids. Thankfully, she is not aspirating!

Thrush {Yeouch}

Payton (and Mommy) were diagnosed with thrush today. Mommy has been hurting and we finally figured out why! LOL. So off to the doctor we went to get some medication. Poor Payton's little tongue is full of little blisters...that darn antibiotic caused this!!

Also, while we were at the doctor, I asked them if we could have a swallow study done on Payton. I have had some concerns that she may be aspirating, but it is hard to tell because she also has reflux. They agreed to give us a referral, so we will be having a video swallow study done soon.

Payton weighed 19 lbs, 9 ounces today at the doctor!

Payton's 1st Haircut

Payton had her first haircut today! She did so well...sat up there in the big chair all by herself!!

Payton has an ear infection

Payton saw the ENT today for follow-up and for a hearing test. We didn't end up having the hearing test, though, because she has fluid in her ears and the one ear was bulging a little bit, so they believe it is infected. UGH. So, this marks our first ear infection and we were given a 10-day round of antibiotics (Omnicef).

Walking for Down syndrome

On October 14, 2006, we will participate in our first Buddy Walk for Down syndrome. Our team name is "Payton's Posse" and we have been raising funds for a few weeks now. So far, thanks to our wonderful friends and family, we have raised $2,060!!!

Bloodwork Results

Well, the geneticist finally got back to us about the results from Payton's bloodwork. She said everything looked fine, except that her CO2 levels were a little low. So, she wants to do some further testing and we aren't sure yet what that entails or what it means. I have heard that this can be "normal" for people with Down syndrome to have low CO2 levels, but wouldn't the geneticist know that if it were true? Not sure....

Reflux {Payton's got it}

Today we went to see a pediatric gastroenterologist because Payton has been waking up during the night for the past week and I believe it is due to her reflux. It seems the Prevacid we give her in the morning isn't lasting the full 24 hours, so the last two nights I have supplemented her with 2mL of Zantac and that gave her enough relief to let her sleep through the night again. So, I decided we needed to see the doctor to see if we needed to do any testing. The GI advised that they don't want to run any tests (i.e. upper GI or a scope) at this point because Payton is still young and it seems we are able to control her reflux with meds. If she is symptomatic as she gets to be a little older, then they will look at running tests. I feel comfortable with that, only because she does seem to be okay on the Prevacid/Zantac combination.

Early Intervention

Today we had our 6-month IFSP evaluation. She was evaluated on expressive communication and gross motor....she was ranked at 6 months developmentally in both categories. Payton is now 7 1/2 months old, so she is a little behind, according to them. She ism however, on the cusp of moving to the next range, so that is good. For gross motor, they won't increase her range until she can sit unassisted for 10 minutes. While she CAN sit for 10 minutes, she still falls over on occasion, so we have to get past that before they'll bump her up. Either way, she is doing great in the whole scheme of things!!

Up until this point we have only had PT twice per month. Although the therapists don't feel Payton needs it, we will be adding ST once per month.

WHAT WE ARE DOING IN THERAPY

ST home activity suggestions:

*Try hard/tough solids to encourage gumming/chewing on the sides - the goal is not biting and eating! This is a nice way to work on bringing food to her mouth (holding and bringing to mouth). Try using pizza crust, hard edges/pieces of bagel and/or beef jerky/fruit strips.

*Place the meltable solids towards the sides of her mouth to encourage chewing (i.e. fruit puffs).

Payton Giggles

We took this video of Payton giggling today (don't mind the crazy lady off to the side...LOL)...

We finally got it {bloodwork}

Well we tried the blood draw again today...and we were successful, if that is what you want to call it! After getting half way through, her vein collapsed and we had to go to the other arm. At least this time we had a tech that was able to hit a vein in each arm!

Good job my brave little girl...mommy loves you!

Payton is famous!

A few weeks ago, Payton had pictures taken for a calendar that is being put out by our local Down syndrome group (DSANV). We found out today that she made the cut and her picture (granted...a "small" picture) will appear in the month of April. We wish she could've gotten a "big" picture, but we shall see what it looks like whenever the calendar is done!

Moving on up!

Well, last night we finally bit the bullet and moved Payton out of our room and into her own. :( She slept in her crib like an angel. Thank goodness it was a smooth transition, so far!

Bloodwork

This morning I had to take Payton to have blood drawn. My stomach has been in knots over having to do this. Infants alone are a hard stick, let alone an infant with Down syndrome (their veins tend to be super tiny). After spending hours going from lab to lab trying to find a competent person, I finally settled on one lab that was willing to try. There were two techs, neither of whom could really feel, nor see her veins. One tech claimed she could feel a really small one in Payton's right arm, so we decided that she would try to get it (mind you, we needed 3 vials filled). So, try away.....SHE MISSED. Payton was wailing, tears flowing. The tech, even though she missed, did not pull the needle out, but continued to move it around and jab it in there trying to find the vein. Well we all know how that feels...not pleasant! So I told her to get the needle out of her and that I would go somewhere else. Well, needless to say, I was not going to go anywhere else today, as we both had enough.

Down Syndrome Convention

This past weekend we went to Atlanta for the National Down syndrome conference. I just wanted to share a little bit about our weekend. We had an amazing time. We were able to meet a bunch of the families that I have met through the online listserv and they all were amazing. I have established some good friendships and that helps so much to have someone you can connect with that is walking in your shoes.

I went to two sessions...Oral Motor Therapy and Physical Therapy. I was a bit overwhelmed by both of them and shed a few tears in trying to figure out how I was going to offer Payton everything I want to offer her, without having the time, nor the money. I received a few pep talks and seem to be back on track. I have a place to start and I feel comfortable knowing that what we are doing, in addition to some new sensory therapy that we plan to begin, is satisfactory for her, I hope.

One of the biggest things that struck me was the sense of community that I felt. It was so nice to be somewhere that I didn't have to worry about people asking me why Payton sticks her tongue out sometimes, or get defensive about people staring at her because she has Down syndrome. The people at this conference adored her and they adored her for the beautiful little girl that she is. It was such a comforting feeling. We had adults and children with Down syndrome going crazy over her; and we had adults and children without Down syndrome going crazy over her. I can't say it enough that the whole general feeling of the conference was awesome. I don't know if the hotel staff had training prior to the conference, but they were more than accomodating to everyone. They were so nice and never did I see them staring at anyone oddly, or treating them differently. If anything, it was the exact opposite. If only "real life" were that way. It was so nice to be walking around and talking to random people who looked at you when they were talking to you, rather than trying to hide the fact that all they wanted to do was look at your child because she is "different". We never experienced that this weekend.

We obviously got to see the whole spectrum of Down syndrome...infants, children, adults. I feel as though when I'm out in public, it seems the people I see that have Down syndrome tend to be lower functioning. Not sure why, but I guess that is just my experience. That, to me, being the parent of a child with Down syndrome, is depressing. But at this conference, I saw teenagers and adults with Down syndrome that functioned as if they were "typical". I loved that. It gives us hope. There were several times when we would be walking along and be like, "Oh my gosh, did you see her? She was so cute! And so stylish!" LOL I know that might sound materialistic, but it was so nice to see that they CAN be that way too. And so many of them running around holding hands with their boyfriend/girlfriend...well it was just so sweet.

I honestly thank God for blessing us with Payton. We don't need or want anyone's pity. We have seen and now understand how blessed we are to have had our eyes opened to this whole other part of society that people know so little about.

Starting foods ...

Well, Payton is six months old today and I don't know where the time has gone. We had previously decided to wait until this time to introduce her to foods. So, now we start our journey with oatmeal (rice cereal can cause constipation and Payton already has problems with that, so we will be giving her oatmeal), fruits and veggies.

Our appointment with Payton's geneticist

We had Payton's six month appointment with Dr. Lewanda (geneticist) today. She was very impressed with Payton and the things that she is doing. She commented that she is SO social, her eye contact is great, she smiles all the time and her motor skills are looking great. Oh, and she weighed in at 17 pounds and was 26 inches long, which is awesome!

Payton's heart is perfect!

Payton had her 6-month followup appointment with the cardiologist today. After doing an EKG and an ECHO, they told us that her VSD (the small hole that she had) has closed! She has been released from the care of the cardiologist, which is excellent news!

A boy, his sister and some underwear ...

Payton's brother, Mason, just adores her. He is very protective of her and gives her kisses constantly. Mason is in the middle of potty training and is finally conquering it. Here is a video montage of the kids...

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4th of July

Well yesterday was Payton's first 4th of July. We had a great time. Here is a video of our evening...

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Payton is mastering sitting!

Payton is starting to giggle at us...it is the cutest thing! She is also getting better with her sitting. We are so proud of her! Here is a video:

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Off to the ENT

Today Payton had an appointment with Dr. Bahadori, an ENT that sees a lot of kids with Down syndrome. The reason we went to see him is because kids with Down syndrome have smaller ear canals and nasal passages than a "typical" child. As such, the pediatrician cannot see in Payton's ears very well.

The ENT said Payton's ear canals are a little bigger than what he is used to seeing in kids with Down syndrome, but they are still small. She had no fluid built up or infection, so that was good.

We will continue to see the ENT every 3 months.

Payton is 5 months old

Payton is five months old today and is doing awesome! She is growing so fast, we can hardly believe it. When we learned of her diagnosis, we didn't know what the future held for us. So far, it has held nothing different than having a "typical" child.

Here are some of the things she is doing:

She holds her head at a 90 degree angle when on her tummy.

She tracks objects with her eyes.

She puts pressure on her feet by standing assisted.

She rolls over quite frequently.

She smiles at us all the time.

She explores with her mouth.

She puts her hands together.

She sits unassisted while leaned forward for seconds at a time.

She brings her hands to our face when we lean in close.

She holds objects in her hands and transfers the object from one hand to another.

While these may seem like silly things, they are great achievements for a child with Down syndrome. Simple things like holding their head up can take months, even years with some kids.

And most importantly:

She is loved by her mommy.

She is loved by her daddy.

She is loved by her big brother.

We feel blessed that Payton is doing as well as she is doing. We have been truly amazed by our little girl and we can't wait for what the future holds.

Gathering with friends

This weekend we went to Pennsylvania to go to Sesame Place, where we met up with some of our friends from Downsyn.com. We had so much fun and it was so nice to meet everyone!

Here is a video montage of our weekend:

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The story of our baby girl...

On January 7, 2006, Payton Lynn was born, weighing 7 pounds 1.5 ounces and measuring 19 3/4 inches long. She was a beautiful baby with a head full of hair, just like her big brother! Soon after her birth, our angel was diagnosed with Down syndrome.

Immediately after delivery, Payton was whisked away to the Neonatal Intensive Care Unit (NICU) for breathing problems. Once the doctors' suspicions arose that she may have Down syndrome, they did blood work and called in a cardiologist, since many babies with Down syndrome have heart problems. Her red blood cell count was high, as is fairly normal in Down syndrome babies, and we learned that she had a PDA, a small VSD, and her heart pressures were off. This, believe it or not, was great news, as her heart problems could have been much worse. The PDA is a blood vessel that is open in utero, but is supposed to close at birth...well Payton's did not close. The VSD is a hole in between her ventricles. We were told that this hole is tiny...pin-point size. Due to her pressures being off, the blood was shunting back and forth through these two openings, causing her to have to work harder to breathe. So, she was put on 100% oxygen assistance until the PDA closed...which it did, thankfully, after a couple days. Her heart pressures were getting better and eventually the blood quit shunting through the VSD, so we were able to wean her off of the oxygen. By day four, she was completely weaned and was doing great. We have been told that her VSD should close on its own with time, given how small it is.

The next step was getting her to increase her feedings and make sure she could hold her body temperature. She did fabulous in these two categories and was able to go home when she was seven days old. We were thrilled!

Payton was sent home on a 30-day dose of antibiotics, as her kidneys were also slightly dilated. The doctors did not seem too concerned with this, as they claim they see it often enough and that the dilation should go down. Well, we'll see. We will have another ultrasound on her kidneys to see if they are better.

Since coming home, Payton has adjusted great...we have all adjusted great. Mason adores his little sister and can't get enough of her. While we were initially heartbroken over our angel's diagnosis, we quickly came to embrace it. Sure, we cried our fair share of tears, but time heals the pain. We don't look at her and see a big DS on her forehead. Payton is just a baby, our precious little girl. She is no different than any other baby...all except for that fluke with her chromosomes. That does not change the amount of love that she needs from us, nor the amount of love and joy she gives us, and we hope that everyone else sees that too.

The Creed of Babies with Down Syndrome
My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

Excerpts From My Diary: Day Seven {Payton's Birth}

Last night they decided they didn't need to supplement Payton with oxygen and she took all of her bottles. They are slowly increasing the bottle amounts and decreasing her IV fluid. Payton has increased her feeding amounts quicker than they expected ... she is up to 60 mL, so the IV fluids will be gone soon. Thank God!

Payton got a washcloth bath today at 8:00 p.m. ... she was less than thrilled. Her belly button also fell off today and it looks as if it might be an outie.

Payton's bilirubin is down to five, which is great. The nurse is just waiting to receive orders to remove the lights. They are also weaning her from the warm temperature in the isolette and if she can hold her body temp, she will be in an open crib by this afternoon. Praise God!

Cardiology did an EKG this morning and we are waiting for the results.

Excerpts From My Diary: Day Six {Payton's Birth}

This morning when we went to visit Payton, her feeding tube was gone. The nurses told me she actually had pulled it out ... feisty little thing! They hadn't needed to use the tube, so they left it out. The nurses also removed the nasal canula, as they have not supplemented her with oxygen since 11 p.m. last night, which had only been done as a precaution. She also is still under the lights for jaundice.

Pastor stopped by today and we had a nice visit.

Excerpts From My Diary: Day Five {Payton's Birth}

Today Payton's oxygen was turned down from 30 to 25, per the cardiologist. They are trying to wean her, as long as she does okay. She is ... or she seems to be ... very lethargic today. She tuckers out easily when eating and falls asleep quickly. She hasn't been eating as much as the doctors would like, but she is also on an IV still and getting fluids that way. The doctors are also trying to wean her off of the IV. They told us they might insert a feeding tube if she doesn't eat as much as they would like, or if she continues to tucker out.

My nerves are shot today ... I'm very worried about her being so lethargic.

Payton's bilirubin count is down a couple of points today, but she is still under the lights so that her levels don't go in the wrong direction. She also is being continued on antibiotics, even though there are no signs of infection ... I'm told this is precautionary.

This afternoon, while bottle feeding, Payton sucked well, but forgot to breathe and couldn't keep up with swallowing. Her oxygen saturation fell and her lips turned blue ... luckily the nurse was in the room and was able to turn on an oxygen supplement quickly. The doctor examined her and said to give her oxygen while she feeds and to insert a feeding tube to give her whatever she doesn't take from the bottle.

At 8:00 p.m., I was able to nurse and they let me try without an oxygen supplement, as I think she does better on the breast than bottle. She did great! Prior to her 8:00 p.m. feeding, they had inserted the feeding tube.

I called at midnight to see how her 11:00 p.m. feeding went on the bottle. They said it went good, but they had given her an oxygen supplement. Despite this, she took the entire bottle with no problems.

Excerpts From My Diary: Day Four {Payton's Birth}

The cardiologist came today and wants Payton left on oxygen for today, but wants the doctors to start weaning her tomorrow. On a side note, I was allowed to nurse twice today, with bottle feedings every three hours. Payton seems to be latching on okay, but doesn't last very long, nor does she seem to eat very much.

Excerpts From My Diary: Day One {Payton's Birth}

Around 3:00 p.m., we went to the hospital because I wasn't feeling well ... I had diarrhea all day and had thrown up. Upon arrival, I was having small contractions and was also very dehydrated. They gave me several bags of fluid to hydrate me and to see if the contractions stopped or if I was truly in labor. The contractions began getting stronger and around 10 p.m., the doctor broke my water. I was about 5-6 cm dilated at that point. By about 11:40 p.m., the baby had descended and we got ready to push. Payton was born at 11:52 p.m. after I pushed three times. She was having trouble breathing and wasn't turning as pink as they would have liked, so a NICU team was called in. Even after the NICU team gave her extra oxygen, she didn't get her breathing up, so she was taken to the NICU.

After awhile, the NICU doctor came by to tell us that Payton was breathing okay, but that she was on oxygen. The doctor also made a comment about her eyes being slanted upward and that there may be some things they need to look at ... but the doctor wanted the swelling from birth to go down first. I immediately knew she was talking about Down syndrome and asked about other signs. The doctor wanted to wait for the morning doctor to get there an d see what he thought, but I told them to go ahead and draw the blood for the chromosome test, because I knew she had Down syndrome.