Nephrology Appointment

Well, we had a good appointment today. Bentley and Marseille are both stable. Their organs looked good-- as good as they can-- with little to no change. What a blessing.

We were ready for this appointment because Bentley has been throwing up randomly and has been complaining of being tired a lot. He had 3 throwing up episodes in past four weeks with no real sickness attached to them, and no new unusual foods. I thought that his blood pressure medication might be too high for him now, but his blood pressure was good when they checked it so his medicine is going to stay the same. At first it was high and they had to recheck it.

I was really proud of Marseille, it was the first appointment in her entire life so far that she didn't cry the whole time. The Dr. actually got to feel her stomach :) YAY! Though she did cry the two of the three times that she had to get her blood pressure taken... we're working on that! Marseille's blood pressure was still high after her not crying reading, so we have to up her dosage.

Anyway. Another good thing that came out of the appointment, in a round about way, was their blood pressure prescription. We no longer have to get it compounded, this will save us a lot of money and time! Because compounding is expensive for pharmacies they don't take insurance, but now since Marseille's dosage changed we can just get the pill form. And because we live in America and a lot of people have high blood pressure, it is on the $4 list at most pharmacies!! What a huge blessing!! I just have to crush it for them :)

Now on to the issues! Both Bentley and Marseille came back with high CO2 counts. The Dr. is thinking that they might have Respiratory Acidosis. Basically Respiratory Acidosis is an acid imbalance in the body caused by breathing problems. There is an excess of CO2 and if forms an acid in the blood. The "remedy" for them is sodium bicabonate or an antacid.

The Dr. was also concerned with how small Marseille is. She has not grown much in the last year and Bentley has capped off too. PKD does make children smaller, but not as small as Marseille. Danny's and my heights were factored into his thinking, but the high CO2 can definitely be contributing to her size. He was okay with their weight, just not with their growth. They ordered more blood work for their blood gases and to get a more accurate CO2 count. The Dr. said that they would call with the results and they scheduled our next appointment for August.

So, we drove over to the hospital to have the kids get their fingers pricked. As soon as we stepped into the room to get their fingers pricked, Bentley put his head down and said very quickly, "I don't like these people!" and then began to wail. The respiratory lab workers were definitely not used to drawing blood from kids, but the kids left on good terms :)

So, overall it wasn't a bad visit! We will let everyone know the results!

Thank you again to all who prayed for us this morning and continually lift us up in our prayers! We are grateful :)

Wow, friends, it's been too long!

Hi there, stranger(s)!

Here is a little update. it's been far too long with way too much excitement. As you know, we did have our first craft fair. The day began very windy and ended sunny with a ton of wind! But what you might not know was... that we made a "emergency" trip to the doctor and the ER. In one day!!!

Wednesday, April 6th both Bentley and Marseille had accidents. Marseille bit through the skin under her lip and Bentley hit his head on the coffee table. Marseille's skin was glued back together and Bentley ended up with three stitches in his forehead. What a day!

It started off like every other Wednesday, which is cleaning day. Just as I was preparing lunch, I heard a scream and walked into the room to see Marseille's mouth covered it blood and all swollen. Poor girl. I cleaned her up and she kept sucking on the swollen part in her mouth which kept making it bleed in the front. After a couple of phone calls, I took her to the doctor. He glued it and said that it would scar. It's tiny so eventually you won't be able to see it.

So, we get back home and finish cleaning. I got a phone call that the host home for cg has a sick child. As easily as my kids get sick, I opted not to go, but said that I could host it here since the house was clean. I found a dessert mix in my pantry and put it together. By the time the dessert was done and we were done with dinner, the ladies began to arrive. As, I was still cleaning up Bentley was talking to some of the ladies and he bent down to get a toy and slipped (I'm going by his story) and hit the coffee table leg. He must have hit it just right, the force of the hit popped his forehead open. Upon scooping him up, I knew we were going to have to get stitches. He was so brave and did so well. The Dr. was amazed that they didn't have to have a nurse hold him down as she put the stitches in. They gave him a race car that he is mighty proud of.

Thursday was Danny's birthday. I made him Shrimp and Chroizo. Then for dessert, we had rice crispy treats and ice cream. Bentley thought that was a lot of fun! One more year for Danny and he will be 30! After all the excitement of the day before it was very laid back.

On Friday, Bentley had a three year old check up and everything is looking good for him :)

Saturday, was a crazy. My friend's George and Danielle got married :) Early that morning, I got a call saying that the bride's dress was too big. She ended up bringing it over and I fixed it. I was a mess until she got here, trying to figure out ideas on how to fix it without having to sew it. I ended up having to sew it! After they left, I followed them because I was helping with the bridesmaids dresses. Whew! It was a lot of work, but it was worth it because the couple is happily married :)

Sunday, we had mini-cg and that was relaxing!

Monday, I prepared for the craft fair.

Tuesday, the kids had their ultrasounds. They did extremely well for having to fast. We won't have results until the beginning of May.

Wednesday, Bentley ended up throwing up in the car after our first errand, which lead to another unusual Wednesday. Right before Danny left for cg the kids got into Vaseline. I couldn't help but laugh! Thankfully we got everything cleaned up, I just couldn't believe all the strange things that kept happening! Wednesday is the day that I want to get things done and God keeps showing me that there is more at stake than my to-do list.

Thursday, Bentley ended up sick so we took it easy.

Friday, I ran errands like a mad woman trying to get everything ready. Thankfully, my mother in law was here to help me with the kids and getting last minute details done! She ended up taking them to her house so they could get rest while we had our busy Saturday! Thanks Mom!!

Saturday, we didn't have a great turn out to our craft fair, but I did sell some stuff and got some orders. I was pleased. This is the first time I've ever done something like this so it was good for me :) I have plenty of alterations to keep me busy, plus these orders on top of that!

While I was at the craft fair, Danny had band practice. I love having the band over at our house. I love hearing them practice and prepare to serve our church :)

After that, we got to go on a date night. It's been a long, long time!! We went to Trio a great dinner and Luna Rosa for gelato! Along with the great food, we had great conversation. It was a very refreshing time!

Sunday, we had an amazing, I mean AMAZING message, given to us. More on that later... that's just how important it was to me. Then we headed to pick up the kiddos from their grandparents house!

It's been a fun, crazy, busy month, but isn't that life?! I cannot believe that this month is more that half over!

Hummm... I'm out of titles

Time for catch up! Pardon the very long post!!

Many of you know that I went to FL a week and a half ago to help out with my sweet sister in law's wedding... so we'll start there!

November 4th - Steve and Meghann arrive with the girls for our trek down to FL. Danny and Steve hung out here until the following Thursday, while Meghann and I took all 5 of our kids to FL.

November 5th - My mom picked up Bentley and Marseille for a fun filled week of Disney, the beach and the space shuttle. Meghann and I set up for the party and had SO much fun hanging out and shopping! That evening was Amy's special shower and bachelorette sleep over! That evening I became slap happy and did not stop giggling the entire trip... and I mean that :)

November 6th - Went for a 4mile run with Amy and Meghann and actually kept up with them, a major feat for me :) We hung out and planned out a couple of days for the up coming week.

November 7th - Attended Metro Life Church. Benny Phillips, one of that pastors, gave me a book and told me that he would like me to start reading it, and the very next day, this book become a huge blessing. Isn't God so kind!

November 8th - On Friday, Danny told me the that the Bentley and Marseille's Dr.s left messages at the house to schedule some immediate appointments due to their bloodwork. So, I scrambled to call them and after some confusion, I was able to make the appointment for the Monday that we got back from FL. I was really struggling because the nurses wouldn't tell me what was wrong and I was trying to keep myself together because I didn't want to have to tell everyone that we were going to have to leave before the wedding and I really didn't want to distract from Kaleb and Amy's day, but most of all I was anxious to know what was wrong with my children! Thankfully, I submitted to Benny's insistence that I read this book and I did. I sobbed over the pages. I couldn't believe that God ordained Benny to give me a book about Jesus speaking into my sorrow and to know that he identifies with the loneliness that comes with it. It's a great book even though I read it through tears. Anyway, the results were Marseille have very low iron and Bentley has very low vitamin D.

The week of the wedding was a blurr... but I will try and keep it simpler:

November 9th and 10th - saw Kaleb and Amy's apartment, got everything ready- boxing up stuff, folding, gluing, showing people what to set up, etc.

November 11th- SPA day!! We had lovely hot stone leg messages and our nails done. The boys arrived and we had the last supper!

November 12th-Bridesmaid Luncheon, decorated church building, wedding rehearsal and rehearsal dinner

November 13th- Wedding Day!! Walked 4 miles in the morning, with Mom R, Amy and Meghann.

November 14th - HOME!!!

It was a busy week, I fought a UTI the whole trip, but I didn't end up having to go to the dr :)

November 15th- Marseille is considered anemic because her iron is so low and she has blood in her stools (not visible). Marseille's iron levels were perfect at her 12 month appointment and now are very low and the only thing that has changed was her drinking milk instead of nursing. So, the Ped. wanted to get the opinion of the GI to see if it could be a milk protein allergy.

November 16th- Marseille 15 month wellness check - has not gained any weight and is now on the supplemental drink that Bentley was on. Also the GI did agree with the Ped. that Marseille's anemia is connected to a milk protein allergy.

November 17th - Pick up supplemental drink samples from the GI and grocery shopping!

November 18th - Finally back to normal!

November 19th - Physical Therapy

November 20th-21st - Stuck around the house, changed over the children's clothes (blah! what an overwhelming job) and went to church meeting :)

November 22- Last physical therapy!! Date Night with Danny :)

I have to be honest I am growing very weary. Weary of appointments, thinking, praying, asking. It's hard to wait, and not see the fruit of being obedient. But God has been so faithful, he has put so many people along my path esp. during my trip, that have encouraged my soul. I received a letter in the mail from a dear friend in FL and I was strengthened by her care and encouragement! Here is a song that has brought many tears and great encouragement to me this week:

Here are the words, if you don't have time to listen:

Verse 1
Out of the depths, O Lord, I cry to You
When I am tempted to despair
Though I might fail to trust Your promises
You never fail to hear my prayer
And if You judged my sin
Id never stand again
But I see mercy in Your hands

Chorus
So more than watchmen for the morning
I will wait for You, my God
When my fears come with no warning
In Your Word Ill put my trust
And when the harvest time is over
And I still see no fruit
I will wait
I will wait
For You

Verse 2
The secret mysteries belong to You
We only know what You reveal
And all my questions that are unresolved
Dont change the wisdom of Your will
In every trial and loss
My hope is in the cross
Where Your compassions never fail

Bob Kauflin © 2008
Sovereign Grace Praise (BMI)

Exciting news :)

Bentley and Marseille's check up went well yesterday. Bentley's blood pressure was just above normal and Marseille's was normal! Thanking God for medicine and the grace to remember to give it to them twice a day :) The doctor was pleased and doesn't want to see them again until January. Can you BELIEVE it!!! No appointments until the new year!! I'm am SO excited.

My shoulder is getting better and stronger. Though I have developed a twitch that brings my head and shoulder together at the same time. Now, all I need is for my eye to twitch and I'll thoroughly look crazy :) The physical therapist said that the tension causing the twitching should go away once my shoulder is back to normal. I hope so!

As far as our sicknesses go, we are all pretty much better! We'll all be entering back into society this week :)

Friday Results

Well, the results are in! YAY! I don't need surgery. My doctor's appointment was a 8:15AM on Friday and the Dr. pulled up the CT scan and said it showed now sign of a mass. So, he poked around at my shoulder again, and told me the physical therapy would be my option! Yes! Exactly what I was hoping for in the first place.

I walked down the hallway to register to meet with the therapist and told them that I was going to be out of town for the next two weeks. She asked if she could see me today. I said sure, but my son has an appointment at 1pm. They saw me at 11:30am.

My appointment with the therapist was long! Especially because I had to bring Bentley. After lots of moving this way and that way, arms up and down, the therapist concluded that what I am feeling in my shoulder is the top of my scapula. My bone has shifted due to lack of muscle my left side. He said that nursing has probably been the biggest culprit, because you are hunched over all the time and lets face it your chest is heavier. So, all that to say, I get massage therapy and physical therapy for the next 3 months!

Bentley's echo went well. He was scared at first but calmed right down. We don't have any results for that!

CT Scan

My scan went really fast and really well! I was so grateful that they didn't have to do an IV for contrast! That is answer to prayer! The images were good enough to be sent to the doctor. So, on Friday I will find out the results of the scan. Now is the fun part... waiting :)

And I just checked my dear friend Jess's blog and she had this posted for today! It is perfect for my situation :) Thanks Jess :)

“In those moments when you are caught, you can rest. Don’t give way to panic. Don’t give into doubt because this is not what you would have planned…You are waiting because there is a plan. You are waiting because your life is under the control of One who is wise and good. You can rest, not because you know what is happening, but because you know the One who is in control of what is happening right now. ” Paul Tripp

Marseille Update

Hey there everyone! It's been a little while and I want to give everyone the news before too much time has passed. Recently Marseille had an ultrasound to check her kidneys to makes sure that she doesn't have PKD. Well, the ultrasound actually confirmed that she does have PKD.
As of right now, her kidneys are slightly enlarged, they do have cysts. Her liver is okay, but it's not a smooth as they like to see. Also, her bile duct is enlarge and there is fluid in her stomach. When they took her blood pressure it was a little high. Her blood work came back stable, so she will not see the doctors until July, when Bentley goes back.

God's grace is all over us right now. We are doing well. We really are! We know that God is in control and we are taking it one day at a time because God's grace is sufficent for today :)I will have a post soon all about that, but I really haven't had any time to post. I've been sewing up a storm! Bridesmaids dresses, alterations, and presents! There will be more to come!!