Our Trip

Selena and I didn’t do much sight seeing in Everett like I thought we would. We witnessed some things that I don’t want to particularly want to write on my blog, thankfully Selena was easily distracted so she didn’t see any of it. Let me just say this it was something I hope to never witness again.

As we drove through Seattle Selena got so excited she almost cried.

She couldn’t believe her eyes when I pointed out Safeco Field where the Mariners play  baseball. She was almost screaming, that is where they swing the bat, bat the ball, and run around the bases!

Next to that was the Qwest Field where the Seahawks play. Now Selena was screaming Go Seahawks! She was totally beside herself at this point.

When suddenly Selena looked up and seen all the big buildings of Seattle itself, she was truly over the top. All she could say was Oh Grandma, look at all those tall buildings. Oh Grandma they are so tall. This has to be the world’s largest city! At this point I explained no not the world’s larges city but the largest city in Washington State, she didn’t buy it though, she still claims this is the World’s largest City. Too bad she was sleeping when we came back through so she missed the view of the Space Needle.

This was the view from our Hotel room, the mountains are the Olympic Mountains. Selena thought it was neat to see the one with the snow on it. She loved all the big busses that went by, but she didn’t care for all the noise of the big city.

One thing that Selena did that I am still laughing at, we got up Thursday morning early, and she had followed me once out to the car to put our suit case in. I was making the second trip to put a few other things in, and thought she was right behind me. I suddenly heard the hotel door closed, I stopped turned around and there was no Selena. I got my key out of my back pocket and as soon as I went to open the door, I realized Selena threw the metal bar across the top of the door, I was locked out. She just wasn’t tall enough to get it flipped back over and began to get scared. I told her to get the chair and drag it over to the door. I could hear her little feet going pitter patter across the floor and she kept telling me, I got it Grandma, it’s heavy but I am getting it and am coming. Once she got the chair to the door I told her to climb in the chair and unlock the door, she did and got so excited I then had to tell her to get down from the chair and move it so I could open the door. I think that was the highlight to our stay in Everett.

From the hospital we could look out and see a Navy Carrier. I knew there were some soldiers coming home that morning, and sure enough when we got done with everything at the hospital their ship was docked, but we could not find a single road that would give us a good enough vantage point to take any pictures, or to truly give Selena a good view of these vessels. I wish I could have found some place to drive to have really given her a good view, I just didn’t know enough about Everett to really know what direction to go.

I know a lot of you are wondering what we found out at the hospital itself. Well, we are still going through tests, but they are looking for a particular gene or chromosome that would cause all the problems we have been seeing in our family, from some of us being born with vertebras that are fused together with no surgery, to heart defects, to one kidney and some things we haven’t seen in the family that this same gene or chromosome could cause like deafness.

We are really still putting the puzzle together and have some more tests to go through, she did have x-rays of her spine, blood work, and was measured from head to toe, every limb, to every finger and toe. They are pretty sure the one side of her face being puffier then the other is a result of being such a large baby and over due by two weeks, it has nothing to do with any of this. We will be taking her for an echo of her heart and a hearing test. Once all this is put together then we may or may not have some conclusions. No matter what the Dr said Selena is very bright and advanced for her age, she said she has never heard a 3 year old with the speech, vocabulary, and understanding that Selena has. Of course Selena had to tell her she had a hypothesis, and the Dr. asked her what that meant and of course Selena explained it which the Dr was very surprised she could say the word let alone know what it meant.

I will keep you posted as we go along.

We Are Home

I just want to briefly update you that we are home. Both Selena and I are very tired. The traffic was on our side in both directions going North to Everett and South to come home. We didn't get a lot of fun sight seeing in since we were only up there for the one night.

We still have some tests to go through and another trip to Seattle this time to the Children's hospital there, since they wouldn't be able to get us in until 3:30 today, and I am sorry but waiting from 9:30 to 3:30 was not something I wanted to do especially after such an early start and we really didn't get a lot of sleep with all the noise of the large city.

I do have some pictures that I will post sometime this week, not many. Selena was just beside herself to see Seattle. She got so excited she almost cried over the site of Safeco field, Quest field, and all the tall buildings. She did not like Everett, and I had to agree with her. I was very disapointed when we could see Navy ships that had came in this morning but I could not find a road that would give us a good enough vantage view for Selena to even understand what she was seeing let alone get any pictures.

Anyway since we are both so tired, I am off to get some rest, and will try to get on and post what pictures and tell you all more about our trip and what the doctor had to say this weekend.

Quick Update on Selena

We seen the Kidney Specialist today. Everything is fine there the one kidney is enlarged, which is expected under the circumstances of it being the only one and doing the work of two. Pretty much everything was the same, since the blood work looked good from her Pediatrician. She will only need to see the Kidney Specialist once a year for blood work, and ultrasound. There is no changes in diet. We will have to make sure anytime we take her to the Dr to have her blood pressure checked. Of course we will watch for unknown fevers, make sure she is well hydrated and doesn’t get constipated. Pretty much the normal things you watch for with any child.

Our next step now is to take her to the Cranial Facial Specialists and also they want to do Genetic mapping, to see if they can figure out what syndrome may have caused this. Basically the Cranial Facial team will either have things to do to correct the uneven facial feature, or just watch it for a while. The Genetic mapping will give Selena the information when she gets older, basically so she knows what to watch for should she choose to have children of her own.

These genetic tests may just shine some light into the unanswered questions I have always had about her mom as well.

Well, that is it in a nut shell. This does not change anything about Selena, she is just as healthy and strong as any other child. We do however want to thank you all for the prayers and positive thoughts that you have sent our way during all of this.

We Have Appt and Good News!

I had made Selena an appt at our local medical clinic to have her ears checked before the weekend with this cold that she has. We did get a prescription should we need it, but at this time the Dr didn’t feel there was an infection. At least we are covered should her ears get worse.

After the appt. I had a message on my phone from her Pediatrician’s office to call Seattle Children’s Hospital to make an appt. I was confused just a bit, as Children’s told me yesterday they would call me. Anyway I called and we got the appt set for May 7.

Now for the best part, we do not have to drive the 104 miles to Seattle, they are going to get her in at the Satellite office in Olympia! What a relief! I was definitely dreading the drive up North.

Now hopefully our weather will hold out so we can get to the daffodil parade tomorrow. 

A Quick Update

We got the lab results back this afternoon. Everything was just fine! This is a good sign that the kidney is functioning as it should and is doing very well at doing the work of two kidneys.

This evening Selena had fun drawing a picture of Papa. Papa asked her to write his name on it and told her how to spell it. This is what she came up with. I helped her a little bit on the lower case a’s but most of it was all of her own. This was Selena’s first attempt at writing a word all on her own. She has wrote letters, but not words until tonight.

A Big Thank You!

I want to take a few moments to just thank all of you who have commented on my previous post about Selena’s kidney issue. I have enjoyed receiving so much encouragement and genuine love from all of you.

I want you to know life goes on as normal here. We are very grateful that we found this news out the way we did, rather then down the road facing a possible problem and not knowing. We feel relieved and blessed, both at the same time that things worked out the way they did. We now will be able to focus on keeping this kidney healthy. Can you imagine not knowing this, and having a health issue come up and having them put her on medication that would not be good for a person with one kidney? When I think of that I count my blessings that for three years she has only had 2 ear infections, and only a couple of cases of flu. She has been so healthy and we foresee that to continue.

This is not to say that it wasn’t a shock when we first got the news, but you know at the same time it was a huge relief, as they had ordered this test to rule out kidney cancer. So while we were shocked this news really was a relief, if that makes any sense at all.

Selena has been a little trooper through this so far. She was the bravest little thing going through the Ultra Sound. I had done my best to explain the night before what would take place during the test, so when the Tech started to explain to her what she was going to be doing, Selena just reached up grabbed the wand out of her hand and put it on her belly and with a huge smile said “See the picture now? See my stomach? It is like our science experiment Mama!” She laid there so curious and was really upset that they didn’t let her see the pictures of her tummy. I was upset with that too, as I asked several times to let her see.

During the blood work, Selena again was a little trooper, didn’t even shed a tear. Oh yes she said it hurt and she complained, but she didn’t cry, nor try to thrash around, we barely had to hold her to get the lab work done. I was very proud of her for her strength and courage. She did inform me after we left, “Mama no more doctors or dentists for now please!” So I cancelled her dental appointment that was scheduled for today. Enough is enough! Except she got mad because Papa threw her pink bandage wrap away, and she wanted to play with it today.

Tonight she explained that while Mama and Papa have two kidneys and pointed the area out where our kidneys are, she explained that she has one very SPECIAL kidney. She does understand more then one would expect out of a 3 year old. We believe with all our heart that God provides each and every one of us with the tools we need to get through what ever we will have to endure, and if this is true, then Selena is a perfect picture of that.

I do plan on making regular posts, probably monthly on what we are learning, and what they are doing for Selena as we proceed forward here. I feel if anything maybe Selena’s story will give others courage, and strength to get through what ever trials they might be facing in their lives. We realize that there are children out there facing more serious illnesses and conditions then Selena is facing and we in no way want to set Selena up there above them, but we do want to share what we are learning as a teaching tool for other children and for parents alike. I think you know we will be beginning a study here down the road on the human body and will spend a lot of time looking at the function of the kidneys.

Again I thank all of you from the bottom of my heart. We wish all of you a very HAPPY EASTER! We will be back into full steam with school next week.

No School Lot’s of School Week

We didn’t do anything as far as school went. We spent our week traveling 80 miles round trip so far 3 times this week, twice in one day for Doctor’s appointments.

When Selena was in for her 3 year check up the Dr noticed that the left side of Selena’s face was fuller then the right side and wanted to see her back for a follow up. I scheduled that and took her in yesterday. Next thing I knew the Doctor was ordering an Ultra Sound to check Selena’s kidneys.

It was news to me but there are several conditions that can cause one side of a child’s face to be fuller then the other side, one of which is Kidney cancer or known as Wilm’s Tumor. Before anyone gets alarmed, NO Selena does not have Wilms Tumor! There is also a syndrome that usually goes a long with Developmental Delays, which Selena has none of the symptoms for. This is why the Doctor wanted the Ultra Sound to rule out the Wilms Tumor.

Let me tell you as with any parent or grandparent when you are told there could be something wrong, you can think 1000 different scenarios in your mind. Well we were no different, but we finally faced the fact that this Pediatrician was totally nuts and nothing would be wrong leaving us looking for a different Dr. We just knew in our hearts that our precious Selena could not have anything wrong, after all she has never really been sick in her three years with us.

I took Selena in for her Ultra Sound this morning, came home figuring what ever we found out would not be bad news. The phone rang at exactly 1:30 this afternoon. It was her Pediatrician calling to inform me that Selena only has one Kidney. I melted onto the kitchen floor. I could not believe what I was hearing. She wanted us in by 4:00 for blood work. Ok, at this point I am game to do anything even though it meant we loaded in and drive the 80 miles round trip again in the same day.

The guess right now as to why she only has one kidney is pretty much up in the air. As far as I know mom was never told there was anything pointing to a problem with Selena’s kidneys before birth. Selena has never had any urinary infections nor really ever been sick. She has only had two ear infections that were caught very early on, and a couple bouts of flu. So the guess right now is because Selena was such a large baby at birth and had ran out of room, she was over due, and mom had what is known as a dry birth, this caused damage to the right kidney and the body just absorbed it. We may never really have any true answers to this. I will keep you all posted as we go along this journey, just what we do find out, and what we learn.

Selena’s reaction to the news that she only has one kidney, “Oh they got rid of it and made me better!” I just looked at her and said, “Yep that is right, and you didn’t even know you were sick.” I have since explained the truth to her.

To end this with a happy note, Selena and I did have so much fun yesterday before her Doctor’s appointment. We went and walked around the Mall in Olympia. Selena got her picture taken with the Easter Bunny.

We then went over to Target and look what we found in the Dollar section.

She can finally make music without having to play on the piano all the time!