Thursday, December 31, 2009

A hearfelt plea from Melanie...

With Melanie's permission I am posting an e-mail she had sent to me this morning. I did not post the family picture however if you'd like to see the Ritzman's and their beutiful family it can be sent to you privately. I told Melanie that there is a strong T18 community out here. I hope that you will raise your voice, share your strength with the Ritzman's. I only "met" Melanie a few days ago through a friend of a friend, but my heart goes right back to those beginning days with Alyssa Grace. My heart now aches for this family and the truama that they are being put through just to see the face of their MIRACLE BABY! How can this be? I don't have answers, but I do have a willingness to help in any practical way that can.~ Trish

A note from Melanie:

I know what I am about to ask is a leap of faith on all your parts. I am asking you to share a piece of your personal and private heart’s story with me, a total stranger, and a group of Doctors you don’t know. I promise I would not miss use this but a thought has occurred to me. These Doctors believe the medical statement “ that Trisomy18 is not compatible with life”. What would happen if they, as a group, were faced with your children’s pictures, medical list of complications that each of you have and are currently facing, and you child’s current ages ???? Then maybe they would see PROOF OF LIFE . Also they would clearly see a realistic view into a lifestyle of right to life.

Would you please help me?!?!?!?
Would you please network this out to anyone who has a Trisomy18 child.
Below I have attached an explanation of what is happening to our family right now.
And a current family photo of us. Melanie and Mike Ritzman of Lancaster County, PA

Well this is the latest
1st my husband sweet honey pill version
and then my right between the eyes Mother Bear version.....
same day, same stuff, & he is the better Christian than I !!!!!!

Mike's Thoughts...

Dear Prayer Partners,

Melanie and I would covet your prayers. We have some disturbing news to share with all of you. Earlier this week Melanie had an OB appointment with a doctor instead of a mid-wife. One of the questions we were to get nailed down before delivery was whether the doctors in our practice would perform an emergency c-section if Baby Joy was in distress. T18 babies typically go into distress during labor. The answer Melanie received as quite disturbing. The doctor basically told Melanie that there would be no need for a c-section because "IT" is going to die anyway.
Today, Melanie and I had an appointment with the NICU advocate and received further clarification... The OB doctors in our practice are "indecisive" as to whether they will perform an emergency c-section if Baby Joy is in distress. We will have a final decision next week when our advocate and midwife meets with the doctors to discuss our case... Please pray that the doctors will perform an emergency c-section if needed.

Melanie's midwife has been great and will do everything that she can to see that Baby Joy comes into this world. The NICU is on board and will do what they can to make sure she gets the care she needs. CHOP, DuPont, and John's Hopkins do work with T18 issues. The only problem is whether our delivery doctors will perform an emergency c-section if she is in distress.

On a positive note, we have been put in touch with 7 families that are raising T18 children ages ranging from 13 months to 23 years. This makes the above prayer request that much more distressing. We have a friend that works at Johns Hopkins and she is getting us contacts there with medical professionals that deal with genetic diseases. One of the families that we are in contact with is giving us contact information for doctors at Children’s Hospital of Philadelphia (CHOP).
Melanie and I are in a spiritual battle regarding the sanctity of life... The medical community is split on how to handle children diagnosed with T18. She has been labeled and is not even referred to as a person. She is an "IT". It appears to me that the sanctity of life only applies to healthy children.

Please pray that Melanie and I keep our "cool" and can maintain a witness through this entire process. Please pray that we will be able to find another OB practice that we can work with if these doctors will NOT agree to perform an emergency c-section. We have had a lot of emotional ups and downs.

Well, I think I have sufficiently overloaded all of you. Please feel free to ask us any questions that you might have..

Thanks for Praying


Tuesday, December 29, 2009

A pregnant mom whose baby has Trisomy 18 is looking for information

Alyssa looking very compatible with life, Christmas morning with some of her gifts.
Can you explain T18 in 20 words or less? Neither can I and so I need your help! I just came in contact with a lovely Christian mom, who is currently pregnant with a baby girl diagnosed as having Trisomy 18. We had a long talk and this mom is on the ball with getting informed and preparing for her future little one. Melanie is a well experienced mom but is new to the world of T18. She still has questions and would love some encouragement for this journey.

I didn't know that Alyssa would have Trisomy 18 prior to her birth, so I am at a loss for helping another mom prepare. If you would e--mail me or leave your contact information I will get you in contact with Melanie. They do not have a website/Facebook. Melanie and Micheal's baby girl is due March 19th! So this makes Melanie about seven and a half months pregnant.

Melanie was recently seen by an OB in her practice and she shared with me the following experience:" He was recommended because he had birthed two Trisomy18 babies already.
I soon realized that he had just let them die upon birth and his statements to me are following: We do not need to do a cesarean if "it" has distress during normal labor"it" is not compatible with life and should just be left to die I WAS AND STILL AM ILL TO MY CORE with that Doctor's thoughts..."

Alyssa is 17 months old, my heart is overfilled with the joy that she brings to our everyday lives. I am learning more and more that this T18 community is strong. If you have information that would benefit Melanie and Micheal in their situation, please leave a message here and send along your contact information to me so I can forward it to them.


Christmas Photo Ops..

Merry Christmas and Happy New Year ! Here are few pictures taken over the kids winter break:

The Girls

Alyssa's oldest brother and her older sister and I

So sweet!

Wonder if Jess tastes good?

Miles of Smiles

Cuteness coming and going...

One of my favorite pictures:

Definetly a Christmas to remember!

Wednesday, December 9, 2009

Admitted to and now home from the hospital

Alyssa was taken to the ER at Dupont on Friday due to her oxygen saturation level dipping down into the 70’s. We didn’t have oxygen at home, so off to the ER we went. This was her 1st stay at DuPont. All of her care has been at CHOP with the exception of her pulmonary care. Alyssa is home now and doing well with the support of oxygen. We hope within the week to have her Bi-PAP machine working fully to her benefit. So without further ado here are the excerpts:
Alyssa and Nurse Shirley (Day 2~ feeling okay)

December 5th-December 7th : I found a computer! They couldn't hide it from me. Friday night started with me out alone, doing some Christmas shopping only to follow up with a hospital visit later in the night. To recap the last month had been relatively boring. Most of our appointments were in home. Alyssa had a few routine doctor appointments but nothing too interesting. We spoke with Alyssa's pulmonologist last week and she was placing an order for us to have oxygen and a Bi-Pap machine at home for Alyssa. These last few weeks have been filled with catching up on/organizing paperwork, scheduling appointments, following up with doctors on the phone and managing the some other thing for the older kids.
Then as some of you know, last week the stomach virus hit our household. J and E got the worst of it but we all were affected. So from late Thursday night until Tuesday sleep was just an unmet dream, laundry was a nightmare, and I was a zombie. By Thursday I thought we were getting back on track but Alyssa seemed a little congested. She was also bringing up mucus. I attributed it to the Nebulizer treatments that we've been doing for the last 6 weeks or so (that it was working at getting gunk out of her lungs). Yet Thursday night her oxygen stats were dipping lower than usual and took longer to recover. By Friday she was coughing frequently and having a little difficulty managing the extra stretchy mucus. Friday night her Oxygen stats were in the 70’s or in the low to mid 80’s and was not bouncing back to a good level 95+or staying in the 90's for long. So the zeal from Christmas shopping was halted with a trip to DuPont. Ed stayed with the kids and Alyssa and I came down around 3am. Alyssa's pulmonary doctor is at Dupont which is why we are here vs. CHOP. This is her 1st experience being admitted here. She is on oxygen now and doing better. Off of oxygen she is still low. They are thinking lung infection..More information to come. I've got to run as this area is closing. I'll update more when I can. I don't expect to be here more than a day..We will see.

Alyssa receiving her Nebulizer treatment and Chest PT.
We'd appreciate prayers for affective treatment for this lung issue for Alyssa and comfort she is just cranky. That'd we'd seamlessly get supplies ordered and delivered home for management of Alyssa's sleep apnea prior or near the time of her discharge. Also a neat lady that works with Alyssa was recently diagnosed with and recovering from Cancer treatment please pray for her recovery. Hannah (CB Hannah317) is also recovering from a recent surgery. Not to mention several friends and supports recovering from the flu, stomach bug and other fickle colds prayers for them to heal and return to their activities would be welcomed too. I keep promising to update a few different events and I really want to/need to do this. Prayers for me to sleep better so I can get better organized in thought and action would be great. Aside from the recent setback over all we are okay. Hope you are too. Happy belated Thanksgiving.
Well we are still at DuPont. My understanding is that they want to wean Alyssa off of the supplemental oxygen and then watch her to see how she does. She has a non-specific lung infection... in other words they know what it's not: RSV, Flu, and Pneumonia~ which is great. Yet without a clear idea they are shooting in the dark on treatment. Alyssa is on both oral steroids and antibiotics to treat this infection. In addition nebulizer treatments w/Chest PT every 4 hours (I do it at home 1-2 times a day) along with the oxygen. Its working as she is bringing up lots of gunk. They use a Yankour (a suction tube for the mouth) to get out the secretions other wise she swallows it and then vomits some time later. Funny I was talking to Kim (Alyssa's Clinical Nurse at home) about the Yankour the other day. Three days ago I had never heard of it or seen one. Now I'm ready to take it home and use it! We know Alyssa has obstructive sleep apnea so I think there isn't a rush to get her out till we know when we will have oxygen and the Bi-PAP at home. She'll only need it at night thankfully. Thanks for the continued prayers. By the way Ed is doing a great job wrangling the older crew. Almost wonder if I'm needed! He got them to clean; they went out on the town, sounds like their having a blast with their dad. I'm glad that we are able to "tag" team like this that IS half the battle. Okay till later~
Alyssa loved her therapy and would often fall to sleep during the session.

Okay the what- if's are starting in my head...what if this is pulmonary hypertension? They are treating this as a infection because everything else came back what if this is PH? I am looking forward to the break of night with dawns light…Which means rounds will soon start. Then I can talk with the doctor and get some facts: asleep with O2 Alyssa is at 97% dropping occasionally to the mid/low 90"s. Without she is all over the place but not lower than 84% unlike at home Friday when she dropped to 71%
Now either b/c of less intake or I don't know why Alyssa isn't wetting her diapers but is having loose stools. So she may need to be this will all play out...You got me! I am trying to stay present in the grace and gifts from God. Even though I fall short he does not. Prayers that Alyssa will "bounce" back would be great that whatever is going on will be well managed and resolved allowing her to continue making strides...Sorry for the choppy nature of this entry on a strange hospital PC/TV and it isn't easy to type or see.. I hope this makes sense enough to read. More later
On this PC/TV again!! (I’m) feeling better now Alyssa and I both. We enjoyed a visit from Nancy and Tammy. What a nice way to pass an hour or two chatting' it up with friends. It definitely was refreshing. When I got back to Alyssa's bedside, she was just waking from a nap and ready for her lunch. I had an opportunity to talk with the Pulmonologist and Alyssa does not have pulmonary hypertension. However many issues that she is dealing with can lead to it if not well managed. Alyssa has a infection and it is clearing. She will come home with oxygen. We will find out the usage of it tomorrow and she also meets with her Pulmonologist tomorrow before we are discharged.

Marta I do suction Alyssa nasal suction but never done oral suction I was told today the way you had mentioned is good for kids that have a sensitive gag relax, which Alyssa does? I just have to get comfortable with it all.

Lord willing, we will be home sometime tomorrow. Thank you for staying updated and support. It's nice to have a place o spill my thoughts, reflect, get encouragement and get back on track. It's not easy, but this is how it is and I thank God for continual presence. To take a thought expressed by Elizabeth George: "..With a heart full of faith and hope, with God by your side and by his great grace" I can love him no matter what b/c he has seen and does oversee every detail of my life. At 2 or 3 am it's hard for me to stay focused on this fact, multiple sleepless nights make this promise feel distant, ongoing trials cause me to wonder but deep down I know it to be true.. I've got to trust and obey. Next time I hope to be updating you from home! Tammy and Nancy your visit meant so much thanks you for coming down!
We are home! Alyssa and I arrived safely home from the hospital yesterday afternoon. She was released with oxygen and as I am learning with hospital discharges once you come home there is still "stuff' to do to meet the doctor’s orders. After reaching home the DME (Durable Medical Equipment) Company came by with the oxygen tanks. We weren't totally overwhelmed with the idea of having this in the house as we had some when Alyssa was on Hospice service. The difference is this time we are using it, which is overwhelming at first. Prior to the hospital stay, we were I the midst of re-arranging Alyssa's room to better organize the equipment and supplies. She was also set to graduate from the bassinet to a crib. The crib arrived while she was in the hospital so she got to take her first test run in it last night~ she loves it. We love that we can see her without having peer over the sides or under a canopy.

So we had to make room for the air-room converting oxygen machine, the 2 medium size tanks, 3 small tanks, and the pending "M" tank a.k.a the BIG KAHUNA all of which are back up tanks and/or tanks for when we are out and about. Right now Alyssa needs oxygen (and the bi-pap machine) at night. During the day she only needs the oxygen if her saturation level drops below 93. So after getting a lesson or two on how to handle the oxygen, I was out again getting medication. Finally after her night routine of a Nebulizer treatment and Chest PT ... I was able to better relax and enjoy being back home.

We woke up this morning and headed out the door to fulfill some longstanding appointments the first was for her 6 month Ultrasound : a cancer screening for Whilms Tumor and the 2nd with her Orthopedic doctor. Both went well. For fun Alyssa threw in a visit with a GI we had never met prior b/c her G-tube was significantly leaking. Thankfully we happened to be in the same building as a GI clinic, so we were squeezed into the schedule. It turns out buttons often leak after/during illness. Too much to explain her suffice to say we added another cc of water and there is improvement. We got home about 3:30 and shortly thereafter the DME Company was back this time to bring and teach us about the Bi-PAP machine. Unfortunately miscommunication, and a petite baby = not being able to use the Bi-PAP. Yep we have it but can't use it till they can secure a properly fitting mask/head gear. The respiratory therapist from the DME was concerned that the hospital would release Alyssa without training and proper equipment. The hospital therapist put the oweness on the DME Company. In the middle lies Alyssa. Thankfully the oxygen is doing a wonderful job at keeping up her stats. We also have the support of the pulse ox, and if she should need it the apnea monitor.
Tomorrow we follow up with Alyssa's pediatrician. Hopefully she will be getting the H1N1 at this visit too. On the fence about it before but now seeing how easily her respiratory system can weaken, it's a faith filled leap to a needle prick. Our hope is that it will only benefit her. Okay I'm zonked and a few loose ends yet to tie up!!Alyssa at home w/oxygen resting.

Tuesday, September 29, 2009

Strabismus Correction

Alyssa's eyes began turning in when she was 4 months old. She was prescribed and began wearing glasses when she was about 7 months. We have noticed with each bit of assistance improvement in her ability to interact not only visually but socially as well.

She had surgery yesterday on her right eye ( eye muscle correction). Her right eye was the strong eye, until her left eye was corrected in April of 2008. After April gradually her right eye began to turn in more. We wanted to correct her strabismus (crossed- eyes) to help her get the most out of her vision field.

The surgery went well. We can see a big difference already. We'll post after surgery pictures soon. Alyssa handled sedation like a champ! (whew) She is now resting comfortably on the couch. We expect that the redness and discomfort to decrease and resolve within in a week. Until then we will spoil her more than usual with hugs, kisses and cuddles.

Monday, September 21, 2009

August had been busy...

aAbove is a picture of Alyssa receiving a bolus feed for her Gastric Emptying Study. We decided to have this study performed because she began vomiting routinely after her feeds since having the G-tube. We opted for her not to have a Nissen fundoplication (This surgical procedure tightens the valve between the esophagus [canal connecting the mouth and stomach] and your baby’s stomach) when her G-tube was placed. Alyssa has mild to moderate reflux. Our hope: with proper medication management and flexible feeding rates we'll be able to better control her vomiting. We learned from the study that the rate in which Alyssa's stomach empties is within the normal range. Using this information we have made adjustments to how we feed (the rate, timing intervals etc.) Alyssa's vomiting is decreasing, I also think part of the vomiting is due to muscle weakness. There are times that a good sneeze /cough while going "poo" will bring on vomiting, to much pressure in the belly for her weak muscles to control or hold in all in. (???) It's a day to day battle. Alyssa eats some food by mouth, in which she tolerates well. Hopefully this will increase. Alyssa currently weights 17lbs and 13 ounces; she is 25 inches tall.

Alyssa saying "hello" to Dr. L prior to her MRI and CT scans. Dr. L an anesthesiologist was able to intubate Alyssa on he first go! Considering her small airway this was awesome. The less attempts means less trauma to her airway and less irritation after waking up. For her last sedation by another doctor, he made multiple attempts before deciding to go the way of a lighted fiber optic scope.

Sedation is a scary thing for us, when thinking of Alyssa's health concerns. Alyssa has had one other sedation experience and she did well, however we can't take that for granted. This time she recovered well too. My one major complaint was for the after care team. We felt as though they were rushing to get us on our way. In other words ready to send Alyssa home about 30-35 minutes after the scans, even though her respiration stats were all over the place. We had to stand our ground in waiting it out for Alyssa's respiration to return to her "normal". We use an apnea monitor and Pulse Ox machine for Alyssa, so we are aware of what her typical respiration patterns when awake and asleep, sick with a cold and well (w/T18). We know the settings, so when at the hospital her stats intermittently dipped and remained low then perked up~ they said something along the lines of oh you probably never noticed but she has slight apnea spells` don't worry, she recovers quickly...( but on at least 2 occasions it wasn't so quick). Our response "NO" Alyssa thankfully hasn't had a registered apnea episode since bringing her home last July, we know her normal and what was showing up after the studies was not it ( by the way her normal is the same for other babes her weight/size).

So she remained a little longer in recovery then typical and her stats became consistent. Could you imagine how tense/fear-filled our 1 hour drive home (longer w/traffic) would have been if we hadn't stood our ground? It sounds easy to do, but even for the most confident of people I don't think it always is; I'm just glad we were able to this time.

Below: Alyssa resting...slowly waking after the studies.
Alyssa was sent home on hospice care seven days after her birth. By three months her first hospice provider was ready to pull out because she was thriving. Also it was suggested by those reading her apnea reports to discontinue her apnea monitor because she hadn't had any episodes. Yes, this sounds great but imagine our frame of mind...most of her doctors were still predicting that she would soon pass; even her very supportive geneticist cautioned us saying that Alyssa wasn't yet "over the hump". Alyssa's geneticist strongly suggested that central apnea could occur at any moment and the chances of so didn't decrease until the one year mark. So we retained the apnea monitor with the support of her pediatrician and went with another hospice provider (that didn't frown on us working with Early Intervention as well). Now at 14 months old, Alyssa has been off hospice for five months. We still use the pulse ox and apnea monitor. Below: Alyssa during her sleep study.
Oh, what a night this was. She didn't seem to mind (much) the leads, wires or even the head wrap. She was a good sport until the nasal cannula! That was too much and she howled like I never heard her before. She got so worked up that she vomited and we had to redo all the dressings. Through the night she would rest well, then seemingly remember where she was and start crying all over again.
The sleep study was ordered by her Pulmonary doctor. Alyssa has a diaphragmatic eventration, snores a bit and again with T18 the apnea concerns the study would give us good information (hopefully). We are still awaiting results from the study.
One appointment we were able to cancel was to the pediatric dentist for the casting of infantile dentures. JUST JOKING!!! This is a running joke in our household as our kids teeth rather late. Alyssa takes 3rd place (out of 4) as her rice grains popped up by the end of her 13 months. Can you see them? Yes two teeth came up and her gums are swollen, so as with her older sibs' more teeth may come in quickly. You know, I wasn't sure if I was going to see our girl with a toothy smile. Even though they are just peeking through it is a welcomed milestone!!
Below: Dr. A holding Alyssa. He's meeting her for the 1st time since delivering her last July. Alyssa seemed to remember him. She was talking his ear off, I suppose updating him on what's been going on this last year? When taking the picture I think Dr. A obliged because he remembered delivering her but I don't think her fully remembered all the events of that night. Not until after putting her down (commenting how chunky she is) and taking a glimpse of her chart. His back turned to me, he did a quick half step and said something like ..ugh given her diagnosis this is something hugh? I just smiled and said "yeah." He then took another look at Alyssa smiled asked her age again and upon my response slowly shook his head side to side with a broad smile.
In addition to the above appointments: Alyssa had a repeat visit to the Cardiologist, an annual re-visit to confirm she is cleared cardiac wise. After a brief scare/miscommunication and a repeat echo; we know she does have an innocent heart murmur and is otherwise heart healthy. Dr. K. a surgeon was consulted for her diaphragm issues and she was given the all clear. At this time surgery is not needed. She was also seen in the seating clinic at CHOP, for a feeding chair, stroller and bath chair. She was re-evaluated by her eye doctor and Alyssa is scheduled for surgery. She will have her right eye strabismus correction. This was her strong eye, but after correcting her left eye; the right is not turning in. She was seen by her nutritionist too~ whom would like to see more weight gain ( we are trying). Alyssa still has stenotic (small) ear canals, so we are going to try hearing aides. We waited it out, as this was suggested back in May (?) but we know Alyssa can hear (she does have some loss per her ABR) and wanted to give her canals time to grow. Since they haven't and she is making sounds, is interested in the world around her we want to further encourage this so we will try the hearing aides. Wouldn't it be neat if the mix of the hearing aides and some speech therapy would increase Alyssa's verbal skills? Her ENT visit brought a close to Alyssa's August appointments; told ya' a busy August!

Tuesday, September 15, 2009

Catching Up

Alyssa has been changing leaps and bounds in our eyes. Lately I've been so focused on the sad and difficult part of T18. It is time to catch up on the things that bring joy and encouragement in this journey. We are so thankful that Alyssa is enjoying being apart of our family as much (we hope) as we enjoy her.

The bright spots in our day come when she does her dastardly dog laugh (ya know~the raspy hehehehe) when tickled or if she thinks she's going to be. Yes she is anticipating the actions of others, when lying on her back she'll pull her right leg in and crosses her arms over her chest to protect herself from prying fingers, all the while smiling a wide open smile laughing. At night when the house is still, she'll babble and coo, we've had many late night conversations. I love staying up just to hear the sounds I was told would not come. Alyssa loves to play with her toy bar, batting, holding, trying to suck on the hanging toys. She sits/lays in various positions to access the toys to encourage skill development.

According to The 9 major physical milestones are :

  • Smiling (8 weeks): Alyssa was on target with this. She surprised her geneticist, when flashing her a smile at an appointment.Just to confirm it was a social smile and not an "accident" Alyssa did it several times in response to Dr. S.
  • Rolling over (2 or 3 months) Flipping from back to front often takes until around 5 months because it requires more coordination and strength. Alyssa began rolling to one side at about 4 months and to both sides by 7 months. Her roll to the left is stronger. She is not flipping back to from yet. She requires guidance to get a full roll, this is just the placement of her arm so it doesn't get "stuck" under her body. She is still learning how to tuck properly and not to arch incorrectly. She does love to roll, we work on it often for this reason.
  • Grabbing (3 or 4 months) Alyssa began grabbing about 6 months. However wasn't truly consistent and focused until about 8 months. Again this is a skills she continues to develop as she favors one hand/side over the other.
  • Hugging (5 months) Alyssa was a snuggler from the day she was born, but hugging with intent...hmmm not yet. Due to her low tone it was hard to hold her upright facing my body without support. So she hugged me in this position whether she wanted to or not. In the last 2 months she has developed enough head control that I can hold her in this position without additional support, so maybe I'll get a natural hug real soon.
  • Playing peekaboo (6 months) Alyssa loves peak-a-boo. It has been such a good game for her. She anticipates the cause and effect actions of the game. It'll be more fun for her as she develops skills to take the game to the next level( sounds like I'm talking pro ball).
  • Sitting up (8 months) Alyssa is beginning to sit unsupported. She can do so briefly intervals of 45-50 seconds between repositioning. In other words she sits, she collapses, is helped to gain good positioning and repeats until tired. This is wonderful to see, as once again we were told this or much of the other skills she has gained were not to be expected.

Alyssa's physical skill development is in the range of a 4-7 month old~very scattered. Some of this is due to muscle weakness, it is difficult for her work against gravity. When things are modified she is able to do more in one position than in another. We've noticed that with weight gain, there is skill gain. As we address her vision issues positive changes occur as well.

Alyssa's social development my guess is around 7 months. Her speech development is delayed which may be related to hearing issues. We'll see how this turns out as we address her hearing. Alyssa loves to watch people, smiles, mimics, and likes bright colors. I have been playing her a mix CD of Classical music and baby babbling/cooing ( we made it ourselves). The hope: to inspire language. Who knows the true benefit, but she does enjoy listening to it and will babble back to her recorded "friend". In the last few days she has begun to babble more to people outside of our household, it is nice to see her connecting to the world around her.

Alyssa receives physical therapy and occupational therapy each 4 times a month. She also has specialized instruction (learns how to play) 2 times a month . We would like to add speech therapy. Crawling (6 to 10 months) Pulling up (8 months) Walking (10 to 18 months) Alyssa at 14 months is not doing any of the above now..but ya never know~ it could happen someday. indicates that there is a 2 months window in either direction for skill development. If the child is beyond that 2 month period, she would be considered delayed. So yes, Alyssa is delayed. I do see her making changes/gains everyday and that is what matters most to us. Alyssa is 14 months old and delayed as much as a year behind her true age. Yet she is happy, interactive and much loved. Not bad in our opinion.

Why then do we do what we do?
Easy because we love her and like anyone of our other kids we want her to aspire to her full potential ~ whatever that maybe. I am confident that we will know when enough is enough. Alyssa has a fiery personality and I have no doubt that she won't hesitate to let us know her limits.

Monday, September 14, 2009

Showing off

A 6 minute video of Alyssa during various PT and OT sessions from the summer. Alyssa is steadily making progress. More updates to come!!

Thursday, September 10, 2009

First Day of Preschool

Today is my older daughter's first day of preschool. Wow, she's on the younger side; a mere 3 years old but we thought it might be good for her considering our current lifestyle. I am sure she'll come to really enjoy it, she loves learning and is a social butterfly. No tears this morning for the drop off, quiet an accomplishment when this is her first school experience aside from Sunday school.

I said no tears right? Well not on her end nor on mine until I got home. I think is was a long overdue watershed. A part of me crying because she's growing up but there was more emotion connected with it. I felt somewhat caught off guard, heck really off guard by it. The first few days/weeks after Alyssa's birth I cried A LOT. My body and/or minds way to adjusting to things. Seriously I cried at the mention of simple things like a word~"blanket"~ ooohh Alyssa cuddled in the same blanket as "X"~ and the tears came. After a few weeks of this I was fed up with the crying and willed myself to keep a stiff upper lip.

I was still emotionally connected but wanted to face the world with dry eyes and a measure of resolve. Faith directed resolve but with less or hopefully no tears. It worked too. There was the oddball ocassion like, Alyssa coming out of surgery A-okay and Celebrating Alyssa's first birthday that I did cry but then who wouldn't?

Today though I did one of those gut wrenching balled on the bed, can't catch my breath either pass out or gasp for more air cries. You know the kind that rocks your body and soul to the core. It was a good 10-15 minute water shed; and then I stopped wiped my eyes and tried to decide what to do with the rest of the "me" remaining before having to go pick up my girl.

In a small home with 6 people, there isn't a lot space for alone time; let alone time for alone time. Never would I want my kids to see me that vulnerable. So now I get the merit of Preschool. My mom's guilt for sending my oldest "young" daughter out in to the wild lands of Christian Preschool has diminished.

Bottom line even though I didn't want to acknowledge it: I needed a good cry. By the by Alyssa slept soundly the entire time. Thank God for the big and small things~

Thursday, September 3, 2009

Inspired by the Botts Family

"Better, far better, with Christ to be, living and loved through eternity."~Poet Unkown ~

Right now I'm driving down the T18 highway in the backseat of a friends car...Brenda Botts. Gods at the wheel and Brenda along w/Bri (Jerry and Ashley) are alongside in the passenger seat. The view from the back is alittle obstructed but from back here the road feels hilly and narrow and it's hard to see where we're being led.

I'm feeling motion sickness and wondering how I can get comfortable. You can see this isn't the most comfortable ride for them as a family, but they are doing what they can to make the most out it. The Botts family, they are enjoying their togetherness. They are glad to have a trusty car, and a reliable driver. They're happy that they can focus on what's happening in the moment and allow their driver to worry about what is ahead. They aren't even wearing seat beats! Trusting that God will get them to their destination safely.

Me, here in the back.. I want to lean forward and strap them in. I want to ask the driver to slow down, or stop for bit so I can catch my breath. But I'm just along for the ride, a stow away waiting for the rise of the next hill, dreading the decline..wondering if there will be a clear view of what's ahead.

The Botts family have been kind in letting me stow away here in the backseat, they share bits of their front seat treasures with me. They share their morsels of food (encouragement) and fresh water (faith in a living God), even their medicine ( big doses of T18 reality) willingly. Being back here on this trip is helping me to prepare for when it's my(our) turn in the front seat.

How blessed I am that God is sustaining the Botts family so much so that they are willing to share their experience. How blessed are they to have such a loving and compassionate God. Brenda and her family are teaching me, and are examples of how God does work within. God is good. Even when the end is near He is good.

Yesterday Brenda wrote on Brianna's blog: "Pray, pray, pray for comfort for Brianna. The time is near, very near. I guess from this posting you can tell the doctor appt. didn't go very well. Her heart has deteriorated rapidly. He said she has less than 14 days to live, that's two weeks, less than 336 hours, less than 20,160 minutes.....and that was earlier today. Followed today with in part:Bri is still with us. We are all wiped out. Last night was so bad that we were praying for Jesus to take her in his arms. There was no comforting her, even with medication. But once again our God showed mercy and opened up a room at the Hospice House (less than 5 miles down the road)...

As I posted days ago on our wndrfllymdeblog :
Last year I frantically looked up T18 to get answers. The doctors hadn't given us the official diagnosis for Alyssa yet, it was by a chance that I gleaned this was something they were looking into...after coming to honor page after honor page of precious babies held in memorial I found Brianna Botts. A baby girl (16 month old) living with T18! I watched the news clip of the Botts family story, saw the pictures of this cute little girl and thought "wow, look at that miracle." I contacted Brenda right away, and in what I've learned is her innate kind way..she reached out to me immediately. Brenda has guided me along this journey with a mixture of zeal and restraint, always sharing the realities of T18 with a gentle candor, for this I am always grateful.

Brianna does give hope, she gave it to me in the wee morning hours on July 16th 2008. Brianna has overcome much in her life and there is no one on this earth to say she will not overcome more. If you've made it this far in my rambling then I ask for you to fervently pray for Brianna and her family..pray for their hearts, spirits and minds to be graciously prepared for what the Lord has in store for Brianna. Hope remains and I pray that God who has been merciful to the Botts family will continue to sustain them."

It's a week past that post entry and God has been good to the Botts family to Brianna. I share this all becuase I need to...I can't tell you what Brenda's favorite color is or how she takes her coffee. Yet I feel we share a bond of friendship, and I am grieving with her, Jerry and Ashley.

God commands Christians to join in the suffering of others :
"Weep with those who weep" Romans 12:15

You have done that for our family and now I am asking you to uphold the Botts family. Pray as they have requested, or visit Brianna's site and leave an encouraging message. I know they would appreciate your prayers. Sadly the reality of T18 is now being seen...Brianna at 2 years was thriving only months ago and now is preparing to be with Christ. The sadness is not for where Bri is going it is for those left behind and their missing their beautiful spirited loving girl/sister.

Monday, August 24, 2009

The T18 roller Coaster ~just rambeling

I love the baby stage, I always have. It's the only moment when you actually feel somewhat in control of your child's life. You get to choose what to feed her,what she'll wear, who'll she'll spend time with and best of all you can tell her what to think...yes you dooo love peas! There are better things then this of course, the kisses, the cuddles, the smiles...need I say more?

One way I rationalized this T18 thing was by considering my daughter with T18 as experiencing an extended baby stage. Each day that our girl is blessed with another day she develops and gains skills but at a much slower rate than a typical baby. So if your like me and love the baby stage what a bonus.

Then I heard about Brooke Greenberg. She's been in a "baby" stage for 16 years. Diagnosed with Syndrome "X" essentially Brooke stopped growing at 11 months old. I saw her story on TLC and I couldn't help to compare Brooke's issues to Alyssa's. I really had identified with her mother, and her family painted a reality-based picture of what our future could be like. Different yes, but similar...then it really hit me I'm thinking about a future for us with Alyssa.

This is something I don't often allow myself to do. I've moved beyond keeping myself to just the day (I now buy more than a 2 weeks worth of diapers) but I've never looked much beyond a month. Seriously I do not allow my heart to fully live with a future view of our lives. Do I have hope yes, and faith yes but my will is not greater than God's. I must submit to Him and to His plan. What if His plan is not like my own. Everything according to His purpose for my benefit and to His glory. We have be blessed with 13 months wonderful months. Our hearts desire is for Alyssa to be with us for many more years. Yet she may not be...

It was like a hitting a concrete wall when I allowed my minds eye to shop along side of Brooke's mom as she tried to find "teen-style" clothes for her beautiful pint sized girl in a baby/toddler shop. I thought to myself "Go , mom! The way you treat Brooke is the way others will treat her..." When Brooke's mom confessed she didn't always tell strangers Brooke's natural age, she allowed them to assume she meant 16 months when she plainly said "16". I could relate, might I do the same thing? While Alyssa could grow bigger than Brooke, will she?

Anyway that was 2 weeks ago in the mean time we had a concern regarding Alyssa's heart and many of the old fears came flooding back. Only to be put back into perspective the next day when we received a good Echo report on her heart. A quick dip on the T18 roller coaster that preceded a bigger drop not for our immediate family but a member of our extended T18 family.

Brianna ( another blue spell, with these spells confirmed as being pulmonary hypertension; there's nothing more that can be done. After a brief hospital stay over the weekend she is now home on "comfort care". okay this is worse then hitting a concrete wall...

I haven't blogged about this yet because I want to encourage Brianna and her family. I know that lifting them up in prayer is one of the best things I (anyone) can do. I do that and will continue to pray for them. I just don't know if sharing the fears that stir in me in this whole T18 journey would be the appropriate thing right now. Not that it's wrong to talk about the realities of T18, or that Brenda/Jerry are unaware or easily offended. Just that when I open the door to those thought what a doozy that first step can be...and I don't know how encouraging that can be for Brianna's family, my own, or anyone who visits here wanting hope.

Last year I frantically looked up T18 to get answers. The doctors hadn't given us the official diagnosis for Alyssa yet, it was by a chance that I gleaned this was something they were looking into...after coming to honor page after honor page of precious babies held in memorial I found Brianna Botts. A baby girl (16 month old) living with T18! I watched the news clip of the Botts family story, saw the pictures of this cute little girl and thought "wow, look at that miracle." I contacted Brenda right away, and in what I've learned is her innate kind way..she reached out to me immediately. Brenda has guided me along this journey with a mixture of zeal and restraint, always sharing the realities of T18 with a gentle candor, for this I am always grateful.

Brianna does give hope, she gave it to me in the wee morning hours on July 16th 2008. Brianna has overcome much in her life and there is no one on this earth to say she will not overcome more. If you've made it this far in my rambling then I ask for you to fervently pray for Brianna and her family..pray for their hearts, spirits and minds to be graciously prepared for what the Lord has in store for Brianna. Hope remains and I pray that God who has been merciful to the Botts family will continue to sustain them.

So that's how my T18 roller coaster has been like lately: up and down, swift turns left and right with no end in sight...thankfully.

Monday, August 3, 2009

Alyssa's 1st Birthday Montage

Thank you Drew for putting Alyssa's birthday video together. You did a great job and captured many wonderful memories for us! You are hired for her second year video !!

please note that you may need to turn off the music player at the bottom of the page before starting the video...

At the end of the party we released 18 purple honor of Alyssa and those living with T18 and in memory of our T18 friends that have passed. The party was July 11th, 2009.

Sunday, July 26, 2009

Glad that you are discharged from the hospital Brianna

Briana's out of the hospital! Yeah! For more of an update check out her blog

The SOFT Conference has come to a close..hope it was a good time for all that went and educational. Can't wait to see some pictures~ eeeheeem Kelly :-) !!

Saturday, July 25, 2009

Prayers for Brianna

I don't have many details..just that Brianna is sick. I'm sure the Botts family would welcome some prayers on Brianna's behalf. It is always encouraging when faced with a new challenge to have support from those who are in a similar place. So all you T18 families out there and all of you who love and support our T18 kids...pray and encourage Brianna that she will overcome this setback, and prayers for her mom and dad (Brenda and Jerry) as well as big sis' Ashley as things unfold that wisdom and direction will be pleantiful, that the doctors provide good care allowing Brianna to resume her silly-smiled filled days at home!

Hugs to you Brianna! Your are so loved!!

Friday, July 24, 2009

Giving thanks for year one and looking towards year two...

Alyssa then 1 day old. and Alyssa now at 12 months old.

I don't want to seem insincere or cliche when I say that I'd always had a feeling I would have a special needs child. It being a year into this special world, I pause at announcing this as clarity because such a thought may seem strange. But it's true, just as it is true that throughout my pregnancy with Alyssa, I had an overwhelming connection to the Psalm 139:14 and a repetitive thought in my is by God's grace. I was ignornant to how this would all play out but in hind sight the puzzle pieces are coming together. I do know that I may not get all the pieces to make a whole picture but I'm getting enough to know that it is by divine intervention that my life (and inturn the life of our family) is on this path. All I know is that as I look back I see one piece connecting to another and another ever slowly creating a life puzzle.

The biggest annoyance of this last year is with a *medical community that does not VALUE the lives of the "imperfect" child. It does make me sad that I will have to fight a little harder to get Alyssa's needs met because some else has predetermined that she is not worthy. There's other sadnesses too but they are in the shadows, overcasted by the joys and challenges of being a mom ( a dad) to our shining "star". In our eyes perfect in everyway; yes we know not typical but then again who is? God is so Good. He has prepared me. I didn't know but HE knew and He worked events/moments/people into my life to ready me for this trial.God answers prayers.

I am thankful that once Alyssa entered our lives God saw fit to sustain her life. For how long, we do not know but it doesn't take away from the fact that HE heard and answered our hearts desire and the petetions many of you ferevently made for her wellbeing. God has provided me with a local bibically sound church, gifted preachers and loving breathern to nuture and encourage my caring for HIM and for those that know and love HIM. I praise HIS name in this platform because HE gave us Alyssa. I am learning more and more each day of what HE expects of me and how I can please HIM, praise HIM. Never before would I have exposed myself in such a vulnerable way but here I am and glad to do it if it willhelp bring others to glory.

When I say that I had an inkling that we'd have a child with special needs I don't profess that I had any true level of understanding of how it would unfold. Rather throughout life expereinces I ocassionally felt I was being prepared. This prepartion continues...this last year with Alyssa has been beautiful and frightening. Grief laddened and joy filled. God used instruments ( you all) to help bring us peace and love. He has put me on a path and He will teach me how to follow it. What will this next year bring...more growth? Learning to trust and move beyond the aniexty of what was forecasted by man and into what is pre-determined by God. Yeah I think that it is inpart, the rest are the puzzle pieces yet to be laid out.

Alyssa has overcome a huge hurdle, but is the race won? No, not yet. A long race is ahead of us with many more hurdles. The question on the mind of many is: Now that Alyssa is 1 does this indicate that you don't have to worry about her passing away? Every time I'm asked this question, I hesitate I want to say yes but that wouldn’t be accurate. We celebrated months ago when she was discharged from hospice that she was no longer considered "terminally ill" (A medical term popularized in the 20th century to describe an active and malignant disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient. This term is more commonly used for progressive diseases…not for trauma. In popular use, it indicates a disease which will end the life of the sufferer..a patient is considered to be terminally ill when the life expectancy is estimated to be six months or less, under the assumption that the disease will run its normal course. The six-month standard is arbitrary…)

Now she is in the land of medically fragile (A serious, ongoing illness or a chronic condition that has lasted or is anticipated to last at least 12 or more months or has required at least one month of hospitalization, and that requires daily, ongoing medical treatments and monitoring by appropriately trained personnel which may include parents or other family members, and requires the routine use of medical device or of assistive technology to compensate for the loss of usefulness of a body function needed to participate in activities of daily living, and lives with ongoing threat to her continued well-being). The glass ceiling for Trisomy 18 also remains as most babies born with the condition have a shortened lifespan. Trisomy 18 is a condition of wait-n-see. Each child with this syndrome is affected differently so it's difficult to get a good frame of reference for the path that lies ahead.

Weighing in the aforementioned factors with melancholy assurance we know we are not out of the woods. The SOFT (Support Organization for Trisomy 18 & 13) newsletter comes honoring a child that has passed or we come across a website...some are babies (55 days, 99 days, 138 days) and others are older (18 months, 4 years, 15 years). Living with T18 by definition means that new things develop quickly, routine things rapidly turn into dangerous things and simple procedures are just not that simple for these kids. When I was thinking about writing this, I got a dramatic prompt to how much of a roller coaster T18 can be. Brianna a star member of our T18 brat pack; who's been making strides and celebrated her 2nd birthday around Easter; had an startling health scare ( or CB Briana Botts) involving her lungs/aspiration. This concern had never been an issue for Brianna before and her mom indicated it was a close call..too close. Another T18 brat pack star is Annabel. She's 4 and has had significant bowel/bladder issues and revolving door trips to the hospital for several months now. Just as they get settled at home, another issue arises. There have been other concerns too each faced with unbelievable spirit, courage and love... ( in this journey you will be weary but also ultimately blessed.

God has a plan for Alyssa's life and in this plan I trust. God is sovereign and the plan for her life is already written so I should not concern myself with her longevity. Yet I do (we do). Sadness comes from the knowledge that we will miss her when she leaves this earthly place. If I should outlive her I would miss her every day. This is a mother's selfishness, the desire not to let go of a special gift. Yet eternal life is a greater gift and a gift I want her to receive. In various conversations over the last year the perception of…really with any of our kids/loved ones we never know...There isn’t an expiration date on anyone of us... has been discussed and the idea is spot on.

However for my older children while I shouldn’t have an expectation I do…and I do have a level of certainty that a cold or a rattle sound in a chest will pass and not result in death. I think of Jessica Lindsay celebrating her 6th birthday last summer and a swimming accident led this cute little girl to pass some days later. In reading her blog she is loved and missed greatly. The difference I find between Alyssa and my older children is the expectation. Before I had a chance to dream of a future for Alyssa, the expectation of a future had been thwarted by her diagnosis and harsh prognosis. As Alyssa grows and remains well the thoughts of her passing don’t loom as heavily. They are there, but in the back of my mind. The desire of our hearts speak louder, my (your) prayers speak volumes too. I share this with a level of jubilance...God is being glorified in every breath Alyssa takes. This thought too plays in the back of my mind. It is by God’s grace…

I am thankful for a phone conversation I had with another T18 mom many months ago Alyssa was about 3 months old. She gave it to me straight…you never really relax…There are good days and bad…you wonder, you hope, you pray...then you do. At the time I was hoping for some re assurance that Alyssa turning 1 would be the magic age and all my fears would disappear. What I got was good dose of reality. This legitimate truth helped me to shape my emotional/mental outlook and has served me well these last 9 months.

There is a level of mental preparation required when living with a medically fragile child knowing that your child is “destined” to pass but there is no joy in thinking about, or planning for it. I am glad that the level of urgency is much less now than months ago and the thoughts of her passing are intermittent. The day to day responsibilities of her care, enjoying her, and her being a part of our family minimize what has been projected and magnifies God’s blessing. With faith filled assurance that what was, what is and what will be is orchestrated and so year two has begun.

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4-7

*Please know that when I use a label like the" medical community" it is not an all or none distinction. There are very many wonderful medical professionals that we have had contact with, know of or heard about that do value kids like Alyssa. Just as there are some who do not. For you super professionals I thank you and please continue to genuinely, caringly treat your patients meeting their needs as best you can..for the others you can learn a thing or two and I hope that you sincerely do.

Thursday, July 16, 2009

Annabel's friendship touches our heart....

This purple "A" is for Alyssa on her birthday and was done by Annabel's mom Cathy.

Annabel wore her "Alyssa's Encouragers" bracelet to celebrate our Alyssa's 1st year! Annabel's a great arm/hand model.

Picture below is Cathy in her "Alyssa's Encouragers" T-shirt holding Annabel.

Thanks Cathy and Annabel for helping to make Alyssa's big day so special!!

Tuesday, July 14, 2009

Happy Birthday Alyssa Grace

Alyssa says "It's my birthday!!"

It's a few hours shy of Alyssa's official birthday. Since we have an early start in the morning, I wanted to take a moment and wish a very happy birthday to our special girl. I am at a loss for words..just thankful; for the many prayers and well wishes on her behalf. There is no doubt in my mind that if it were not for the numerous petitions put before Christ for her, she would not be with us today. God is good; not because he saw fit to preserve Alyssa. HE is good because HE loves us in spite of our sin (just to name 1 reason).

He has blessed our family with this trial which has caused us to grow in so many ways and forge a deeper understanding of His word and His place at the head of our table. God is sovereign and has pre-ordained all our days on this earth. I will praise HIM today and tomorrow...I will praise HIM if HE sees fit to call Alyssa home sooner than our hearts desire as I know HIS works are wonderful and that He does all to our benefit and to HIS glory. My hope is that Alyssa's life and in turn our actions will bring glory to God.

If you'd like to celebrate Alyssa's big day with us wear purple tomorrow. If you want send us a picture of you in your purple garb. We'd love it!

While this is a celebration for us; it is also a celebration for those families affected by Trisomy 18 as a "long term" survivor is a indication to doctors that "incompatible with life" statement/treatment is not an okay label for T18 babies. Life is beautiful and these lives are worth living! It is essential for the medical model to acknowledge that perfect is in the eye of the beholder and from my view Alyssa is just perfect.


This post is dedicated to : Gabriella, Magdelena, Meiko, Molly and Sophie..lives lived and called to glory

Saturday, July 4, 2009

Happy July 4th

Hannah, Alyssa and Jessica hanging out...Hannah has Ehlor's Danlos and it's assorted complications.

Hannah has been an inspiration and encouragement in learning how to persevere during long trials.

Alyssa Grace

While in the womb, she seemed to be alright

No clues foretold the battle she would fight

She was born a week past when she was due

Yet promptly doctors knew things were askew

After her birth, she barely topped four pounds

She couldn’t breathe or make soft baby sounds

The doctors did not know what it could be

But then, to her parents’ angst, did agree

This precious and resplendent gift of God

Pulchritude within and on her fa├žade

Hair like ebony silk and eyes like stars

Will so strong to overcome all her scars

This little one was diagnosed

With Trisomy 18, which causes most

Of those affected to die before birth

And other in their first year on earth

But this girl fought so hard to overcome

To beat the odds and never succumb

She pushed onward with every ounce she had

Refused to give up, fail, or just be sad

And now to this day she is still fighting

Making each day new, fresh, and exciting

She was thought beyond hope of surviving

Yet now is one years old, home and thriving~

an original work by Hannah K