Summer Blooms

These are some peonies from our yard that I cut and brought inside. Aren't they pretty? These are all flowers and plants that Ella & I spotted on our walk around the yard today...
This rose plant is right by our front door. It's so special to me because my grandmother gave it to me the day Nicholas was born. It grew really big this year, kind of like our growing boy!I just love summer flowers. There's something so wonderful about planting a seed and watching it grow. Mother nature is quite amazing!

Adapted Stroller

About a week ago, we sent this letter to friends & family:

Dear Friends & Family,

Nicholas was diagnosed with Spinal Muscular Atrophy over two years ago and during that time we have spent countless hours researching various adapted devices that help make life somewhat easier for a child who is nearly paralyzed. One of the items that we have been researching lately is a travel system for Nicholas. Currently, the only travel system we own that Nicholas can use is a double stroller. Unfortunately, Nicholas is quickly out-growing his double stroller and he will not be able to sit comfortably in it within the next six months.

Therefore, we have been working with Nicholas’s therapists to determine the best travel system for him at this time. We also consulted several other SMA families that we trust and decided that the EasyS Adapted Stroller by Exomotion is the only piece of travel equipment that is suitable for Nicholas. The EasyS Stroller is the only adapted stroller which allows Nicholas to be able to sit fully upright or lay completely flat. As his SMA progresses, it is important for him to lie flat to both manage his secretions and to keep his lungs open. The EasyS Stroller is also the only adapted stroller that can accommodate the life-saving equipment that we need to bring with him wherever he goes.

Unfortunately, all adapted equipment is expensive. The EasyS Stroller costs approximately $4,500. Normally we would ask our insurance to cover such an expensive piece of equipment; however, we will need to order a power wheelchair in the near future which costs nearly $30,000. If we ask our insurance company to pay for the EasyS Stroller they will not pay for the power wheelchair because they will only cover the cost of one travel system. Since the power wheelchair is much more expensive, obviously we would prefer they pay for that.

In order to purchase the EasyS Stroller, we are asking for donations from you, our friends and family. People often ask us how they can help Nicholas and we simply ask for prayers. Now we are asking for a small donation to help provide Nicholas with a travel system that will help him to be properly seated and comfortable while exploring his environment. All of the donations received will go into a special savings account set-up for Nicholas. When we reach our $4,500 goal we will be able to order his EasyS Stroller with his vendor at ATG Rehab.

No donation is too small and every donation is very much appreciated. We know this stroller will be life changing for Nicholas as he will be able to comfortably view his environment. Thank you for considering making a donation to Nicholas’s EasyS Stroller. It means so much to us!

Blessings, Jeff & Jessica Gustafson

Since sending out those letters we have already received $2,600 in donations toward Nicholas's stroller! We are very excited that we are more than halfway to our goal and will be able to order the stroller much sooner than we anticipated. We appreciate the generous donations we already received and hope that we can collect the rest of the money by the end of summer. We know the adapted stroller will be a super comfortable piece of equipment for Nicholas and will make things like going to church, doctor's appointments, and story times much easier.

If you are reading this and did not receive a letter from us, but would like to donate to Nicholas's stroller fund, please email me at jessagustafson@yahoo.com. I would be happy to give you the donation information. Every single dollar helps Nicholas get closer to seeing the world from a comfortable vantage point!

Second Sleep Study

Last night Nicholas had his second ever sleep study at OHSU. Here is what he looked like before all the nodes and wires were placed on him...and here's what he looked like after everything was placed.
He was more nervous at this sleep study than at the last one, mostly because he is older and understands that it can be very uncomfortable to sleep with so many things hooked to him. Also, the last time he did a sleep study we stayed at a hotel and this time we were at the hospital. He's not too fond of the hospital after his fifteen-day stay last August.
Jeff and Ella were there with us until it was time for Nicholas and I to go to sleep. Ella played and kept the sleep technicians laughing while they prepped Nicholas. I nursed her one last time at 8:45 p.m. and they headed home for the night. Thankfully, Ella slept all night like she normally does. I must say it was tough to be away from her, even if it was just for one night.Nicholas slept pretty well all night, but did wake up bright and early at 5:20 a.m. demanding that all those nodes and wires be taken off him. I, on the other hand, did not sleep very well and will be heading to bed earlier than usual this evening. It's so difficult to sleep well with the technician in and out of the room, the hall light shining in the room through the crack in the door, and the night time hospital sounds.

We will have the official results of Nicholas's sleep study in two weeks or less, but the sleep study technician told me in the morning that everything looked good to her. She said Nicholas had no apnea episodes, maintained a saturation of 97 or higher all night, had good carbon dioxide output (in the 30's) all night, and had several REM sleep periods. His Trilogy vent is set to c-pap of six at this time and she did not need to make an adjustment during the night. It is comforting to know that Nicholas is sleeping well, and hopefully his pulmonologist will pass along the same message in a couple weeks. I am so glad the sleep study is behind us and we can spend tonight in our own beds!

On a completely unrelated note: more good things are happening for Nicholas thanks to generous friends & family members! More details to come...

Growing Boy

Last week Nicholas had his three-year-old photos taken by my good friend, Heather of Click Photography. Doesn't he look like such a big boy now?! He is quite the opposite of Ella when he gets his photo taken, as he smiles the entire time. Nicholas also had his three-year check-up last week with his pediatrician and he is 42 inches long (95th percentile) and 25 pounds which means that he is not yet on the growth chart, but he has gained weight and is getting closer to the 10th percentile. He also had a feeding clinic appointment last week and his nutritionist would like him to gain 3-4 pounds in the next several months so she increased his food intake for the day from 1100 mls to 1200 mls. Tonight Nicholas has a sleep study at OHSU. Normally his sleep studies are conducted at a hotel, but I asked specifically that this sleep study be conducted at the hospital because that way we won't have to bring so many machines with us. We will only need to bring his Trilogy and feeding pump since the hospital has a suction, cough assist, and pulse/ox. I know our overnight stay is going to be met with resistance from our little guy as I know he will not be happy about having to sleep at the hospital, but we will be be bringing all the comforts of home to hopefully make it as comfortable as possible for him. Wish us luck!

A Truly Wonderful Dad

Jeff is the best, most loving husband to me and he's also a pretty awesome dad. He is a hands-on father who always enjoys spending time with our munchkins. He changes diapers, bathes both kids, feeds them, plays with them, cuddles them, wipes their noses, and dresses them (although it can be pretty funny to see what outfits he chooses). He has a special bond with both Nicholas and Ella and delights in being their daddy. When he gets home from work Ella squeals and crawls over to him and pulls on his pants until he picks her up. Nicholas loves to call out,"da-aa-ad!" until Jeff covers him with kisses. Seeing Jeff as a father makes me love him more than I did on our wedding day. There is nothing sexier than a man who loves his children so dearly and who shows them that love each and every day. We are all so lucky to have him in our lives.

Happy Father's Day!

Nine Months

Our little munchkin is nine months-old today! We went to her nine month check-up at the pediatrician's office this morning and here are her stats: 17 lbs 10 oz (50th percentile) & 29 inches (95th percentile) which means she takes after her daddy with her long, skinny self. She absolutely loves to play with Nicholas and he really likes her to play with him, too. He doesn't complain even when she accidentally pushes her palm on his face or pulls his hair too hard. Most of the time she is very gentle and kind to him and they laugh a lot. Nicholas also doesn't mind sharing with her, unless she takes he favorite toy, then he demands to get it back.
She has finally replaced the army crawl with the "regular" crawl (crawling on her hands and knees) and she gets faster and faster every day. She had also started putting absolutely EVERYTHING into her mouth, even the smallest things that I can barely see. So I have taken to vacuuming at least once a day to be sure the floors are as clean as possible.
She is quite a ham and makes us all laugh a lot. She makes silly faces and sounds and squeals when she is excited or happy. She has yet to cut any teeth but I am sure she will get some in the next couple months. She has started eating some table food: cheerios, rice, beans, banana, and avocado are a few of her favorites.
Tonight when Jeff took her out of her Jolly Jumper she somehow did a headstand and she loved it! Jeff stood next to her as I quickly snapped this photo. She just adores her daddy and they spent time each evening cuddling together before Ella goes to bed. Jeff got moved to the day shift and it has been so wonderful to have family time when he gets home in the afternoon. Ella Roo, you are the sweetest baby girl! You have brought so much joy to our family. These past nine months have zoomed by and we have cherished every moment with you.

Love you to the moon & back!!!

Lyndsey's Baby Shower

My very best friend, Lyndsey, was here for several days this past week and we had a great time dining out, playing with my two kiddos, and meeting up with friends. Unfortunately we were so busy having fun that I forgot to take pictures of our time together. Lyndsey is expecting her first child in October and I was honored to be able to throw a baby shower for her. I did get some photos of that event, thank goodness!

The glowing mother-to-be The future grandmother holding Ella Roo
A few of the shower decorations...
Wonderful friends & shower guests...Sweet little shower guests. I love these girls.Lyndsey had such animated facial expressions while opening her gifts...

Lyndsey, it was so fun to plan this event for you and to shower you and baby Yeomans with love. I absolutely cannot wait to meet your little man and see you as a mother. I love you so much!! xoxo

Sweet Angel Brynlee

Yesterday evening I was absolutely devastated to learn that the beautiful child pictured above had passed away from complications due to SMA. Her mother, Tara, and I have spoken on the phone several times and it was so comforting to have another mom to talk to who understands exactly what it is like to have a child with a terminal illness. Tara was the person who explained the amino acid diet to me which was instrumental in helping Nicholas feel so much better. I will always be so grateful to her for that. Although I never had the pleasure of meeting Brynlee and her family, her sweet smile captured my heart. I have been crying most of yesterday and today because of a cruel, cruel disease that takes the lives of children much too soon. Brynlee left behind her parents and a younger sister. I cannot imagine the overwhelming grief they are feeling right now as they say good-bye to their daughter. If you are the praying kind, please pray for the Liston family as they navigate their way through life without their child. Rest peacefully in Heaven, sweet Brynlee. I will never, ever forget you.